What ADHD Actually Is, Part 2

Since I wrote part 1 of this series, I’ve had a lot of wonderful positive feedback from people with ADHD and suggestions for topics to cover in the future. I’ll address more of those here!

(If you haven’t read it yet, part 1 covers the definition of executive function and how it explains ADHD symptoms, along with information about hyperactivity, depression and anxiety in people with ADHD, helpful resources, and how to go about getting a diagnosis and treatment. I recommend reading it first.)

What’s the difference between ADHD and ADD? 

Before 1994, when the DSM-IV came out, the acronym ADD was used to refer to what we now call the “inattentive type” of ADHD–that is, the type where you don’t have hyperactivity symptoms. [1] Now, however, the term “ADHD” is an umbrella term that covers all of the types. Just because the “H” is in there doesn’t mean you have to have hyperactivity symptoms to qualify for that label. “ADD” is outdated and only typically used by people who got diagnosed before 1994. But if it makes sense to you, you can obviously stick to it.

Personally, calling it ADHD regardless of type makes much more sense to me because very few people with the disorder don’t have any hyperactivity symptoms at all–they just might not look like the typical bouncing-off-the-walls stereotype, especially in girls and adults of all genders. Hyperactivity can also mean needing to fidget a lot, or preferring physical/manual activity to intellectual labor. It’s also possible for some people to suppress all of their hyperactive impulses, which means that their observable behavior wouldn’t qualify for the hyperactive type. That doesn’t mean the impulses aren’t there, though, or that it isn’t taking them lots of energy to suppress them.

Why is the prevalence of ADHD increasing?

It’s difficult to obtain accurate data on historical prevalence of mental diagnoses for many reasons–underreporting (especially when it comes to childhood disorders, which parents might want to keep under wraps due to stigma), different research methods, different diagnostic criteria, and so on. According to the CDC, ADHD prevalence really is increasing, but they caveat that claim in the same way I just did. [2]

There’s a difference between more people getting diagnosed with a disorder and more people actually having that disorder. Greater awareness and improved access to mental healthcare could both lead to increased rates of diagnosis, even if the actual prevalence of the disorder has remained the same. I do think that things like that are impacting rates of ADHD diagnosis.

But I also think that a greater proportion of people would qualify for that diagnosis than 50 or 100 years ago, and I think it has to do with the greater role that executive function plays in modern society.

If you think about the types of things most people did for a living prior to the mid- to late-20th century, they didn’t require that much self-regulation. Farming, factory work, housekeeping, mending–these jobs are physically (and often mentally) demanding, but not in the same way as forcing yourself to spend hours at a computer correcting errors in a spreadsheet or researching funding sources. In fact, today, many people with ADHD strive in professions that rely on physical labor, creativity, lots of small bursts of social interaction, or other things that don’t require sustained focus on one thing.

It’s no accident that so many childhood ADHD diagnoses happen because a child can’t sit still in a classroom. Although our current education system dates to the 19th century (and has had shamefully few updates since then), children in the 19th century didn’t necessarily sit in a classroom from 8 AM to 4 PM. They missed school to help on the farm, taught younger classmates (think one-room schoolhouse), and left school altogether at much younger ages than today’s kids are required to stay until.

That doesn’t mean that our education system is the sole cause of increased ADHD prevalence, and that if we went back to some imaginary historic ideal, the prevalence would drop. (Although our education system is pretty shitty for a variety of reasons.) It just means that school and its demands on executive function often reveal ADHD symptoms that might’ve otherwise stayed hidden until later in life–for instance, when the demands of adulthood push people with undiagnosed ADHD to a breaking point.

Didn’t you say that overdiagnosis might still be a thing?

Yeah, I did. I mentioned in the first part of this series that a disorder can be both over- and under-diagnosed if we look for it in places it isn’t and don’t look for it in places it is. One place where we may look for ADHD too single-mindedly is in children who are “disruptive” or “unfocused” in school.

Plenty of researchers and clinicians have observed that children from violent and chaotic neighborhoods often get diagnosed with ADHD because they present with many of its symptoms. [3] However, in children as well as adults, those symptoms might also be coming from trauma, especially the complex trauma that develops when severe life stressors are constant from early childhood on. [4]

When the role of trauma is ignored, these children (who are typically from low-income families of color) often get slapped with the ADHD label, along with its cousin, oppositional defiant disorder (ODD). [5] Unfortunately, for children who are already bearing the burdens of racism and classism, these labels often serve to add on more stigma rather than help provide effective treatment. If you look at the criteria for ODD, they describe behavior that is completely rational and adaptive if many of the adults in the child’s life are violent, neglectful, and inconsistent. And if you look at the criteria for ADHD, they also describe what happens when undiagnosed PTSD limits your ability to self-regulate.

PTSD symptoms put a huge cognitive load on the brain. People with PTSD are usually hyper-vigilant, constantly looking for potential threats (often without realizing they’re doing it). Small disturbances or unpleasant surprises can cause strong reactions that seem excessive to others. When trauma comes from psychological abuse rather than physical violence or disaster, it can be even harder to notice when PTSD symptoms manifest.

A child who has complex trauma as a result of growing up amid violence and abuse is going to have serious issues paying attention in class and remembering their homework, along with maintaining healthy relationships with teachers and classmates and regulating their own emotions. On the surface, that can look like ADHD. But ADHD medication won’t help, and inappropriate use of ADHD medication on children can lead to those “zombie” symptoms everyone talks about. These kids need trauma-informed interventions, along with real structural changes that address racism, gun violence, poverty, and all of those myriad interweaving variables. No psychiatric label could possibly encompass that.

What’s the connection between ADHD and autism?

A lot of my friends have pointed out that they have been diagnosed with both ADHD and autism, and wonder what (if any) the connection between them is. I’ve also had lots of clients with both, although I obviously also know people with one or the other.

These disorders do co-occur more commonly than they would by chance alone. [6] Unlike mental illnesses, they both manifest in childhood and last for life (this is true even for people who don’t notice their ADHD symptoms until adulthood). They both involve executive dysfunction, and research suggests that some similar neural pathways may be involved in both. [7] They both tend to impact all areas of a person’s life, including school, work, relationships (platonic, romantic, familial, and others), self-care, personal pursuits, and so on.

This can make people stressed about figuring out which disorder they have, or if they have both. If this concerns you, remember that we made up these disorders and assigned sets of symptoms to them. They aren’t natural categories. Although diagnoses can be important for accessing treatment and support, the most important thing is identifying what it is that you struggle with and getting help with that.

If you have executive function issues, medication and/or coaching might help. If you have problems with talking over people and talking too much about your niche interests, it might help to get legitimate social skills advice (for instance, the excellent blog Real Social Skills [8]) or to seek out people who interact in similar ways to you. If you feel depressed or anxious as a result of the ways in which your disability impairs you or creates consequences for you in our (ableist) society, counseling can help.

Although there’s a lot of cool research going on involving brain scans and other relatively new techniques, that doesn’t actually explain why some people develop ADHD and/or autism and others don’t. It’s possible that the same set of root causes, both biological and environmental, can contribute to the development of both disorders.

Why can people with ADHD sometimes focus really well/get things done?

Remember, ADHD isn’t about being “unable to focus” or get things done. It’s about executive function. When a lot of executive function is needed to complete a task, people with ADHD will struggle with it. But when it isn’t, they may do very well.

Some situations in which people with ADHD may be very efficient or productive include:

  • when they’re really interested in the task
  • when it’s about to be due and panic kicks in
  • when it involves working with others
  • when they’re given a lot of structure

So, let’s examine each of these. Everyone has an easier time focusing on things they’re really interested in as opposed to things they find boring, and everyone generally finds it effortful to exercise their executive function. People with ADHD just find it harder than others. When you’re really interested in the task, you may not need to use executive function to do it. (You may need it to plan for or structure the task, though, which is why people with ADHD sometimes have difficulty accomplishing their over-arching goals even with stuff they’re really interested in.) Unfortunately, having issues with executive function can also make it more difficult to tear your focus away from something, which is why people with ADHD are prone to what’s called hyperfocus–spending too much time immersed in something to the detriment of other things that need to be done, including basic needs.

Remember, getting really into things you like doesn’t mean you don’t have ADHD. In fact, it could be good evidence that you do have it.

These principles also explain why so many people with ADHD procrastinate. It’s not just that they can’t get themselves to do the task in advance–it’s that procrastination works, but at a cost. When it’s the night before the 15-page paper you haven’t started is due and you’re completely panicking, executive function may no longer be necessary to get yourself to do the task. Other brain regions and processes take over–perhaps, for instance, the amygdala, which is involved in the processing of fear.

Social tasks can also be easier for people with ADHD to complete. The other people in the group may help them with staying on task, structuring the project, and perhaps doing the really boring parts that they don’t want to do. When working independently on a task, people with ADHD are liable to get stuck when they can’t motivate themselves to do a particularly boring or difficult task, or when they simply don’t know what the next step should be and get distracted by something more interesting before they figure it out. A team member may help them cross this hurdle.

Finally, people with ADHD may do very well with tasks when they’re given a lot of structure rather than having to create that structure for themselves. A person with ADHD may love their work (or studies, or whatever) and have few issues focusing on it, but effectively completing complex tasks requires being able to structure them–break them down into smaller tasks, put those tasks in the right order, and keep the big picture in mind rather than getting bogged down in one specific tiny part of the project. (Sometimes called microfocus, this can really get in the way of one’s goals.)

That kind of mental task requires executive function, too. Many people with ADHD do better in high school than in college because there’s more structure built in. For others, college provides enough structure, but work doesn’t provide enough. Still others luck out and find jobs in which structuring your own tasks isn’t required. That’s why many people with ADHD do well in or even enjoy working in retail or food service–as long as they can regulate their emotions well enough to avoid lashing out at irritating customers.

In sum, there are all kinds of situations in which the role of executive function is more minimal than it is in others, and many people with ADHD can thrive in these situations. That doesn’t negate the fact that they have a disability, or that it might still take them lots of effort and trial-and-error to get to that point.

People with ADHD can also learn to utilize the exact types of things that are hard for them–remembering to write things down, using planners, and so on–to make up for what they’re lacking in executive function. That, along with some other stuff I promised to get to (i.e. gender and ADHD), will be discussed in a future installment of this series.


[1] https://www.additudemag.com/slideshows/add-vs-adhd/

[2] https://www.cdc.gov/ncbddd/adhd/timeline.html

[3] https://www.theatlantic.com/health/archive/2014/07/how-childhood-trauma-could-be-mistaken-for-adhd/373328/

[4] https://www.nctsn.org/what-is-child-trauma/trauma-types/complex-trauma

[5] https://www.additudemag.com/oppositional-defiant-disorder-odd-and-adhd/

[6] https://www.additudemag.com/is-it-adhd-or-asd/

[7] https://nyulangone.org/news/tracing-neural-links-between-autism-adhd

[8] https://www.realsocialskills.org


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What ADHD Actually Is, Part 2
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What ADHD Actually Is

ADHD (or ADD, as it used to be called) is such a misunderstood disorder, especially among adults, that I figured I’d dedicate an article to clearing up misconceptions and helping folks who suspect they have it figure out what to do next.

First, some general principles that organize my thoughts on ADHD:

  • ADHD is a developmental disability, not a mental illness. (More on this later.) This means that it begins in childhood and lasts for life. Individual symptoms might wax and wane, and your environment may be more or less conducive to the way your brain works, but ADHD doesn’t get “cured.”
  • Therefore, you do not “age out” of ADHD. If you were (accurately) diagnosed with it as a child, you still have it.
  • It’s possible for a condition to be both over- and under-diagnosed. That’s not contradictory at all. It just means that we’re looking for it in places it isn’t, and we’re not looking for it in places it is.
  • Having ADHD does not mean you have to take medication, and not being helped by ADHD medication doesn’t mean you don’t have ADHD. Those are separate questions, and there are effective strategies for ADHD besides medication.
  • ADHD has neural substrates [1] (I hate using jargon, but there’s honestly no better way to say “a specific thingie happening in your actual physical brain blorb that relates to the behaviors or subjective states you experience and others observe,” so from now on, that’s what “neural substrate means), but like all disabilities, it’s also socially constructed in many ways. That means that culture and community influence how ADHD symptoms are expressed and understood. That means that we shouldn’t be surprised when ADHD presents differently in women, people of color, etc. Rather, that’s exactly what we should expect.

So, what is ADHD exactly? Here’s the only explanation that matters:

ADHD is a disorder of executive function.

That’s it. ADHD is not about being hyperactive, forgetting things, interrupting people, losing your homework, or any other specific symptom. You can have ADHD without exhibiting any of those classic behaviors, but everyone with ADHD experiences impairment of their executive functions.

What is executive function?

Executive functions are the brain processes that help you decide what to do and when to do it. Many of these processes take place in the prefrontal cortex, a region of the brain that evolved relatively recently and helps us with higher-order cognitive tasks.

There are lots of different executive functions, especially if you get really specific with it, but here are some examples:

  • inhibiting impulses that you don’t want to act on
  • temporarily storing information that you need to use or process (a.k.a., working memory)
  • choosing what to pay attention to
  • ignoring distracting stimuli, whether internal or external
  • figuring out what steps it would take to accomplish something
  • having a sense of how long things take (for instance, when you should start getting ready in order to leave on time in order to get somewhere on time)
  • sorting relevant information from irrelevant information
  • switching smoothly between thoughts or tasks (a.k.a., cognitive flexibility)
  • adapting quickly when a plan falls through or new information becomes available
  • paying attention to and noticing your feelings and impulses

All of us, including people with executive function issues, do these mental tasks all the time. Often they happen without conscious effort. For instance, when you read a book without getting distracted every time a car drives by outside, you’re using executive function skills. When you get dressed and leave the house in the morning, you’re using executive function skills.

There are many different components to executive function and they involve different parts of the prefrontal cortex, and other brain regions too. Executive function can be impaired by many other things besides ADHD, such as autism, inebriation, sleep deprivation (or, in my case, narcolepsy), and basically any mental illness. However, when you have depression, the executive function issues resolve when the rest of the depression symptoms do. When you have ADHD and depression, the mood issues might go away but the executive dysfunction remains.

How does executive dysfunction explain ADHD symptoms?

Let’s look at some typical symptom descriptions from the DSM-V criteria for ADHD [2]. First of all, I hate these because most of them are worded in a way that’s specific to children, and most of them just sound really negative and stigmatizing. But it’s what we have for now.

For instance, the phrase “makes careless mistakes” often comes up. “Careless” implies that the person does not care enough about the task, which is why they made the mistake. But that’s not how ADHD works. A person with ADHD might make a “careless” mistake for a number of reasons:

  • They were having trouble choosing what to pay attention to, and did not notice that they were making a mistake.
  • They didn’t realize that the area in which they made the mistake was relevant. It may be obvious to you, but it wasn’t obvious to them, so they didn’t make an effort to avoid the mistake.
  • They forgot a crucial piece of information that they would’ve needed to avoid the mistake and didn’t know how to go about finding out, or didn’t notice that they’d forgotten until it was too late.
  • They couldn’t make an accurate estimate of how long the task would take, and made the mistake or allowed it to remain in their rush to get the task finished.

Here’s another example: “often interrupts.” People with ADHD might interrupt others for different reasons, too:

  • They got so excited about what they wanted to say that they were unable to inhibit the impulse to speak.
  • They know that because of their impaired short-term memory, they will forget what they want to say if they don’t say it now–and they lack the cognitive flexibility to quickly find another way to solve this problem without interrupting.
  • They find it difficult to switch smoothly between speaking and listening.
  • They failed to pay attention to the fact that the other person was still speaking.

Other criteria for ADHD are simply examples of executive dysfunctions themselves, but sometimes diagnostic criteria aren’t very useful because they tend to describe how other people experience the person with ADHD, not how that person experiences their own life and their own mind. For instance, one of the most common things I hear from people with ADHD is “I just feel constantly overwhelmed, like I can’t manage my life and keep up.” That’s nowhere in the diagnostic criteria, and if you said it to a therapist they might assume depression or anxiety. (Which many people with ADHD have, more on that later.) But that’s the feeling that results when your executive functioning doesn’t match what your lifestyle demands.

What about hyperactivity?

Hyperactivity is kind of the red-headed stepchild of ADHD symptoms. Many people with the disorder don’t have it at all (though you wouldn’t know it from stereotypes and media representations), and it’s not necessary for the diagnosis. The DSM deals with this by dividing ADHD into “types”: inattentive type, hyperactive-impulsive type, and combined type. You can still have symptoms from the other category to be one of the “types,” you just have to be predominantly that “type.” It’s kind of confusing (and in my opinion, unnecessary).

Hyperactivity doesn’t initially seem to have anything to do with executive dysfunction, except perhaps in the case of impulsive behaviors. What about executive dysfunction would cause a person to need to fidget, or to talk very quickly or feel restless all the time?

I’m not convinced that ADHD as we currently think of it is all one disorder. I think it’s two that often go together: one that I’d call executive dysfunction syndrome, and another that some researchers already call reward deficiency syndrome.

(Unfortunately, one of these researchers is using the term to promote some dubious claims about genetics and substance addiction[3], but I’ll be using it more generally.)

I don’t want to get too derailed by talking about dopamine, but in a nutshell: when we do or experience things we enjoy, certain brain regions release the neurotransmitter dopamine–especially if the reward was unexpected in some way. The chemical is a sort of a signal to the body to seek out more of the thing.

We know that people vary in how much and under what circumstances their brains produce dopamine, as it’s linked to all kinds of neurological/mental conditions. But it’s possible, too, that there’s a sort of spectrum–for some people, a relatively small reward is enough to trigger a noticeable burst of dopamine, while others need much more.

Maybe people with hyperactive traits are those who need much more–so they’re always on the go, always moving, just to feel as engaged and interested as others may feel just from petting a cat or listening to the rain. And it would make sense, because dopaminergic pathways[4] are involved in executive function, too.

Anyway, that’s mostly (somewhat scientifically-based) speculation, and it doesn’t really matter. The point is, some people with ADHD struggle with hyperactivity, and some don’t. Executive dysfunction is really the core of the disorder.

And what about depression and anxiety?

If you have ADHD, you almost certainly have lots of symptoms of depression and anxiety, too. You may even qualify for the formal diagnoses of those disorders. Think about it: for your entire life, you’ve struggled to accomplish what others see as basic functions. You may have failed classes, dropped out of educational programs, gotten fired (or quit to avoid getting fired) from jobs, lost friends and partners due to executive dysfunction, and generally failed to accomplish what you want to accomplish. Worse, if you’ve been undiagnosed, you haven’t even had the language to explain to yourself (much less to others) why you failed at those things. You’ve probably internalized others’ opinions that you’re lazy, “stupid,” unmotivated, and unlikely to amount to much. Unless you come from a very privileged background, you’re probably terrified about your future and have no idea how you’re going to pay the rent given that you can’t “adult” well enough to get things together.

The thoughts that therapists consider indicative of depression and anxiety–“I’m a failure,” “Nothing’s ever going to work out,” “What if I lose this job/relationship/apartment,” “There’s no point in even trying anymore”–might actually be very “realistic” thoughts for a person with undiagnosed, untreated ADHD to have. Cognitive behavioral therapy teaches people with depression and anxiety to question their automatic thoughts and see how “irrational” those thoughts are. But what if you have very good evidence that you’re probably going to lose your job and alienate your partner, because that’s how it’s been for your whole life?

That’s why it’s very important for people who think they might have ADHD to dig beneath these thoughts and urge their mental health providers to do the same. Antidepressants, anti-anxiety meds, and therapy that’s focused on these symptoms can provide a bit of relief to someone with ADHD, but it won’t do much, and it won’t help with the ADHD symptoms. And that’ll only reinforce the belief that nothing will ever get better.

The good news is that medication, therapy, and lifestyle interventions that are targeted specifically at ADHD are very effective. Even knowing (or suspecting) that you have ADHD can immediately make things better, because it lets you stop blaming yourself and helps you access advice and support that’s helpful. So while your negative thoughts might be “accurate” in a sense–maybe you really have failed at basically everything you’ve tried, and maybe right now you’re failing too–with the correct diagnosis, all of that can change, and it can change quickly.

What should you do if you think you might have ADHD?

For starters, don’t invalidate your suspicions just because a professional hasn’t diagnosed you (yet). Most diagnoses happen because the patient noticed something first.

Unfortunately, when it comes to ADHD, a lot of medical professionals have their own biases which aren’t helpful to anyone in this situation. Be prepared to advocate for yourself a bit. The good news is that once you’re referred to the right professional, you shouldn’t have to keep advocating for yourself. They will advocate with you.

If you have a primary care doctor, tell that doctor about your concerns and ask to be referred for a neuropsychiatric evaluation.[5] These tests are performed by doctors with MDs or PhDs in clinical psychology, and they’re the primary way to diagnose ADHD. They’re also quite accurate because they measure neurological processes that can’t be faked or altered intentionally. So while some people feel nervous about not being believed when they say they have ADHD symptoms, these evaluations are a great way to put that concern to rest. You can’t fake these results just because you want stimulants.

If you don’t have a primary care doctor, but you have a therapist or psychiatrist, same thing. But if you’re not seeing any medical professionals, I’d actually suggest taking the counterintuitive route and setting up a primary care doctor first. They’re sometimes more likely to have a quick referral for a neuropsych eval available.

If you are uninsured, keep in mind that large medical systems and university hospitals often have substantial financial aid available. For instance, Ohio State’s Wexner Medical Center, where I get everything from my annual flu shot to my cancer surgery, provides assistance to anyone whose income is under 400% of the federal poverty line. Some people end up getting their care almost, or nearly, for free.

Most counties also have free or sliding-scale mental health services for uninsured residents. I’m employed by one of those. Our clients get counseling, case management, vocational assistance, psychiatry appointments, and other services mostly for free, and their medication is free, too, through a charitable pharmacy. The only issue with that is that charitable pharmacies won’t stock all psychiatric medications because some are very expensive. Stimulants tend not to be available, but that may not be true for every county.

(Also, here’s my regular reminder that until they have repealed the ACA, they have not repealed the ACA. If you can, apply for insurance this fall.)

Getting diagnosed can be helpful even if you don’t want medication. But even if you don’t get diagnosed, there are lots of ways to cope with your symptoms, whatever they’re technically called. If you have a therapist, explain to them that you’re struggling with executive function and ask them to work with you on that. If you can afford it, you can also work with an ADHD coach[6]. It’s an emerging off-shoot of life coaching that specifically focuses on the challenges faced by people with ADHD. (I actually hope to get trained as an ADHD coach someday when I can afford it.)

Besides that, two books I recommend to everyone who has or might have ADHD are:

  • More Attention, Less Deficit by Ari Tuckman [7]
  • ADD-Friendly Ways to Organize Your Life by Judith Kolberg and Kathleen Nadeau [8]

Here are some articles that people I know have found helpful:

Many people also find the ADHD subreddit helpful.

This article is already getting super long, so I’ll save all my other thoughts for part 2. (A preview: why prevalence of ADHD is increasing, what connection (if any) there is between ADHD and autism, how ADHD affects relationships and emotional processing, and why people with ADHD are sometimes very good at getting certain things done!


[1] https://en.wikipedia.org/wiki/Neural_substrate

[2] https://images.pearsonclinical.com/images/assets/basc-3/basc3resources/DSM5_DiagnosticCriteria_ADHD.pdf

[3] http://blogs.discovermagazine.com/neuroskeptic/2015/06/10/strange-world-reward-deficiency-syndrome-part-1/#.WrphwP0lExF

[4] https://en.wikipedia.org/wiki/Dopaminergic_pathways

[5] https://www.med.unc.edu/neurology/divisions/movement-disorders/npsycheval

[6] https://www.adhdcoaches.org

[7] https://www.amazon.com/More-Attention-Less-Deficit-Strategies/dp/1886941742

[8] https://www.amazon.com/ADD-Friendly-Ways-Organize-Your-Life/dp/1138190748/ref=dp_ob_title_bk


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What ADHD Actually Is

No, Kids Cannot Treat Each Others’ Gunshot Wounds, Either

A person taking a CPR class practices on a mannequin.
You really don’t have to be a healthcare professional to know that this won’t treat a gunshot wound. Photo credit

[Content note: descriptions of injuries and gun violence]

Yesterday[1] I discussed the phenomenon of adults expecting children to become impromptu school counselors for kids who are socially excluded and possibly planning a school shooting. Today I will talk about another job title that some actual people who are old enough to vote and drink alcohol expect children to take on: field medic.

Erstwhile Republican presidential candidate and professional stack-of-rats-in-a-suit Rick Santorum had some comments[2] about the young people organizing against gun violence, which I recommend reading out loud to yourself because that’s the only way I’ve found of making sense of this word salad:

How about kids instead of looking to someone else to solve their problem, do something about maybe taking CPR classes or trying to deal with situations that when there is a violent shooter that you can actually respond to that….They took action to ask someone to pass a law. They didn’t take action to say, ‘How do I, as an individual, deal with this problem? How am I going to do something about stopping bullying within my own community? What am I going to do to actually help respond to a shooter?’… Those are the kind of things where you can take it internally, and say, ‘Here’s how I’m going to deal with this. Here’s how I’m going to help the situation,’ instead of going and protesting and saying, ‘Oh, someone else needs to pass a law to protect me.’ …I’m proud of them, but I think everyone should be responsible and deal with the problems that we have to confront in our lives. And ignoring those problems and saying they’re not going to come to me and saying some phony gun law is gonna solve it. Phony gun laws don’t solve these problems.

(You might need to read it a few times, slowly, before it makes any sense. Actually, it may never make sense at all.)

The salient points here are:

  • Children should stop complaining to adults about their petty little problems like being shot with assault weapons in schools, and instead “take action” to “do something” about it.
  • Taking a CPR class is a good response to the problem of school shootings.
  • Laws cannot protect children from violence.
  • Demanding that adults pass laws doesn’t count as “doing something” about a problem.

Although I’m still convinced that Santorum is a stack of rats in a suit–surely no human being could blame children for being insufficiently proactive about surviving gun violence–I’m going to respond to his arguments as if he is a human being. I’ll grant him that, even if he wouldn’t grant it to me, or to my teenage siblings.

To state the very, very obvious, CPR is not an appropriate response to a gunshot wound. I am certified in CPR and first aid. CPR, or cardiopulmonary resuscitation, is an emergency procedure (my god, I can’t believe I’m even having to write these words, what the fucking hell) that is useful in exactly one situation: when someone’s heart has stopped. Applying manual compressions to a person’s chest in this particular way can help blood continue to circulate through their body and reach their brain, increasing the chances that they’ll survive once they get prompt medical attention and reducing the chances of brain damage.

I will never forget the words of the fire department chief who facilitated my most recent CPR refresher training: “You can’t hurt someone by giving them CPR, because if their heart has stopped, they are already dead. You’re not gonna make them more dead.” CPR, while taught along with first aid in many cases, is different from many other first aid techniques in that if someone needs CPR, they are already minutes (or even seconds) away from death. CPR can ultimately fail even if administered perfectly because the body needs oxygen and it’s pretty rare for CPR to actually restart a stopped heart. It’s just a way to keep the person from really dying until the paramedics get there.

So, if you get trained in CPR, you will need to be prepared for the very real possibility that you will watch another human being die with your hands on them. That’s…you know, kind of a big deal.

But all of that is mostly irrelevant here because CPR will not keep someone from bleeding out from a gunshot wound. What will, if they’re lucky enough to have been shot in an arm or a leg, is a tourniquet, a first-aid technique that blocks blood flow to the injured part of the body to limit blood loss before the person can get emergency treatment. It’s not for the faint-hearted, whether you’re making or receiving one.

Getting trained and certified in CPR and first aid[3] is a great idea, including for young people. When I was a teenager, many of my friends worked as pool lifeguards during the summers and it definitely made me feel a bit safer to know that they were all trained in, well, guarding lives.

However, when I think about teenagers learning first aid, I imagine situations like, your friend stepped on a sharp object, or you got into a minor car crash, or someone forgot their EpiPen at marching band practice. I don’t think about mass shootings.

So let’s think about them now. If you found yourself sympathetic to Santorum’s comments, I want you to imagine yourself as a teenager, crouching beneath a tiny classroom desk with your best friend, who is bleeding profusely from a gunshot wound. More gunshots and screams are echoing in the halls. Your best friend is trembling, tears streaming down their face. Their blood is on your hands and clothing. You can’t risk getting up and finding a first aid kit, because then you might get shot too. You have a few minutes to save your best friend’s life with a tourniquet you made with a broken-off chair leg and someone’s belt.

Imagine surviving this. Imagine surviving it, but your best friend dies anyway, underneath that desk with you. Imagine that your best friend survives, but with permanent physical damage (to say nothing of the psychological impact). Imagine that your best friend survives, but the other classmate next to you dies, because you helped your best friend first. Imagine finding out later that you spent five valuable minutes performing CPR on someone who was never going to wake up anyway, while someone else bled out across the room from you.

Imagine that this is our lawmakers’ best answer to the fears of children who tell them they don’t want to die in their schools.

Kids and teens are capable of incredible acts of bravery and selflessness, including saving lives. But even after all this–by which I mean, our general political trajectory of the past decade or so–I can’t quite wrap my mind around how it is that a man with children (young children) could so blithely suggest inflicting such trauma on them rather than reckoning with the $116,000 he has received from pro-gun lobbyists since 1990.

See, this is why I’m pretty sure Santorum is a stack of rats in a suit.

But if you’re not buying that theory, I have another one, and it’s more depressing.

What do you think Santorum would’ve said if the Parkland students had, instead of advocating for greater restrictions on gun ownership, marched to their statehouse and to Washington, DC to demand fewer restrictions on gun ownership? What if they’d asked for laws that would provide guns and weapons training for teachers? Laws that would provide grant funding to the NRA so that it can do more of its valuable work? Laws that would increase, in theory, the likelihood that a “good guy with a gun” could take down a school shooter?

Somehow, I don’t think he’d be rebuking them for “asking someone to pass a law.” Those kids would be invited to speak at every GOP rally and fundraising event from Florida to Alaska. We wouldn’t be hearing a peep from conservatives about “coaching” and “taking political advice from kids.”

In other words, it’s just more of the same tribalist bullshit we’ve been pointing out since the election[4] and before, and it doesn’t smell any different.

When traumatized children demand political changes that are associated with Democrats and progressivism, it suddenly becomes okay for Santorum and others to bully them, ridicule their physical appearance, and casually suggest further traumatizing them by forcing them to literally take the problem of gun violence into their own hands. [5]

Memo to Santorum, or the rats which comprise his physical form, or whatever: “asking someone to pass a law” is taking action, especially when that someone is a fucking lawmaker tasked with keeping our schools and communities safe and when the person doing the asking is a fucking child who’s supposed to be able to rely on adults to keep them alive long enough to vote those adults the fuck out of public office.


[1] https://the-orbit.net/brutereason/2018/03/25/please-do-not-walk-up-to-people-you-think-might-murder-you/

[2] https://www.cnn.com/2018/03/25/politics/rick-santorum-guns-cnntv/index.html

[3] https://www.redcross.org/take-a-class

[4] https://the-orbit.net/brutereason/2016/12/27/hypocrisy-often-just-tribalism/

[5] Unfortunately, this is often the only option available to children of color living in areas marked by frequent gun violence. For example, in Chicago, a grassroots group called Ujimaa Medics teaches kids and teens to give first aid to gunshot victims. Remember that if we’re saying the Parkland students don’t deserve this kind of trauma, neither do the children of color all over the country who live it every day.


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No, Kids Cannot Treat Each Others’ Gunshot Wounds, Either

Please Do Not “Walk Up” to People You Think Might Murder You

I had a double mastectomy a week ago, which for the context of this article means two things: 1) I was unable to participate in the March For Our Lives yesterday, although I really wanted to; and 2) I’m not in a particularly charitable mood. You might even say, in fact, that I’m feeling extra protective of this fragile corporeal vessel I’m forced to inhabit.

Right before the mastectomy, during the National School Walkout on March 14, most of us were seeing nonsense on social media about “walk up, not out,”[1] meaning: instead of walking out of school to protest the fact that it’s not a safe place for kids and teens, why don’t you walk up to classmates you think might be the next Nikolas Cruz and talk to them in order to…this is where things get fuzzy. But presumably in order to keep them from becoming the next Nikolas Cruz.

I am no longer a child and I do not have children, but what I do have is two teenage siblings, and I will be absolutely, thoroughly god-damned before I instruct them, or allow anyone else to instruct them, to do something so equal-parts patronizing and dangerous.

Since I don’t have much to do these days besides read and monitor my surgical wounds, let me break this down.

Adults are historically terrible at dealing with social exclusion in schools

I’m not surprised that at the heart of this infuriatingly condescending meme lies a fundamental misunderstanding of social dynamics among children and teens, because adults (at least, the ones who don’t study this academically) seem to have always had difficulty grasping what most kids (yes, even the “socially awkward” ones) know intuitively.

When I was little, this manifested itself in ways such as classroom rules (formal or informal) about having to give a Valentine’s Day card to each student in the class, or invite each student in the class to your birthday party, so that nobody feels excluded. Never mind what a creepy message this ultimately sends, or how humiliating and uncomfortable it would be (and was, for me at times) to receive cards and party invitations from kids that you know hate you.

I don’t know if kids still give out Valentines, but I do still see headlines now and then about elementary and middle school students being forced to say “yes” to anyone who asks them to a school dance [2], or being banned from having “best friends” so that nobody feels excluded [3]. To these things I can only say: yikes, you guys. Yikes. Are the adults okay? Who hurt you? (Apparently, the kid in your 6th grade class who said no when you asked them to the dance.)

What kids know, and what many adults apparently quickly forget, is twofold: 1) Social exclusion will be a part of our lives in some way no matter what; and 2) if people want to exclude you, there is nothing—no rule, no requirement, no sugar coating—that will hide that fact from you, or make it sting any less. In fact, one of the most hurtful and memorable forms of bullying a child can experience is having their classmates pretend to like them, care about them, or include them (to the praise of parents and teachers, probably) only to yank that positive regard away. This isn’t a new thing. Hasn’t anyone seen Carrie?

Social exclusion isn’t a childhood phenomenon; it’s a human phenomenon that many adults also experience in their social groups, workplaces, and communities. There’s no simple answer to it, and any effective intervention would probably have to address the prejudices that people use to decide whom to exclude, rather than the exclusionary behavior itself. But that’s for another article, or rather, for another book.

All social exclusion is not made equal

Another mistake adults make when trying to mitigate social exclusion in schools is assuming that it’s all cut from the same cloth. Sure, on the surface, the behaviors can look the same—ignoring or avoiding certain students, laughing at them, refusing to sit with them at lunch. But the motivations behind these behaviors can vary a lot.

That means that on the surface, you can’t really tell if a group of kids is avoiding another kid because they think his hand-me-down clothes are ugly, or because he’s a pompous asshole who makes them feel small and dumb whenever they try to talk to him, or because something about him is just…off in a way they can’t articulate but that reminds them of when their parents told them to avoid that creepy old dude down the block because “we’ve heard stories.”

Kids, especially younger ones, don’t always know how to make sense of their feelings in that last case. So they sometimes act out those feelings by passing mean notes about that classmate or making fun of his dark baggy clothes or the music he listens to. It’s mean. But it’s covering up for something else that they haven’t been taught to name yet.

(I do wonder, though, how true that even is in today’s landscape. I do know that ten years ago when I was a high school student, I could never have even contemplated mounting the sort of campaign the Parkland students have, as have the many young people of color protesting gun violence during the past few years. I just didn’t have the schemas to understand it. Today’s teens are different.)

In any case, in situations where a school shooter was bullied or excluded prior to his acts of violence, it’s possible that the social ostracism was less a cause and more a warning sign. Maybe his classmates knew something was up, but they didn’t know what, and they didn’t know how serious it might turn out to be.

This means that when you encourage students to “walk up, not out,” you’re not just asking them to walk up to the new kid, or the disabled student, the girl who’s been made fun of ever since she got her period in gym class, or the gender-nonconforming young person. You’re also asking them to walk up to the young white man with violent lyrics plastered all over his locker, who nobody ever wants to talk to because all he wants to talk about are his guns and the need to keep the white race pure or whatever.

Imagine, too, being the new kid or the disabled student who suddenly has a bunch of kids “walk up” to you right after the National School Walkout, only to realize that they’re doing it because they’re afraid you’ll shoot them.

Bullying does not cause school shootings

The idea that the prototypical school shooter is necessarily a “troubled” young person who is cruelly bullied and excluded by their peers is not necessarily based on reality. Even in the case of Columbine, the typical example, it’s straight-up false. [4]

It is often very difficult to put all the puzzle pieces together after the fact and figure out whether a shooter was mistreated by their peers or not, especially if that shooter has committed suicide and isn’t around to answer questions.

Part of what makes it difficult is that social dynamics among kids and teens are extremely fluid and can change by the day. Very few kids are always the victims, always the bullies, or always the bystanders. If you examine random slices of my K-12 life, you will find times when I was mistreated and left out, times when I had a healthy, supportive group of friends, times when I stood by while my friends bullied others, and probably even times when I was the bully. If you read my teenage diaries, you might find some wildly conflicting evidence in there.

Here are some characteristics that many (possibly even most?) school shooters have in common, that aren’t being bullied or excluded: being white, being male, having a record of violence or harassment against women, having an interest or a record of participation in white supremacist/neo-Nazi/ethno-centrist groups. (Another item that doesn’t belong on this list? Mental illness.)

Really, if you wanted to prevent school shootings without having kids walk out of schools and march to demand action on gun control, it almost seems like the most effective strategy wouldn’t be making sure all the loners feel included, but that we intervene when we see young people developing strong sexist and racist beliefs. Almost.

There’s some value in encouraging kids to include each other

That’s not to say that the underlying message of “walk up, not out” is entirely bad. From a totally basic, uncomplicated point of view, sure, it’s nice to encourage children and teens to consider who might feel left out at their school and try including those people. I would endorse that statement in about the same way that I would endorse statements like “it’s good to eat vegetables” and “we should try to drive within the speed limit whenever possible.” That is, I agree, but I’m not about to put it on a bumper sticker or tattoo it on my body.

The generally uncontradictory nature of that statement is probably why many kids already do that. Most kids who are rejected and excluded by some classmates are accepted and included by other classmates. Most “unpopular” kids do have friends—friends who are often also unpopular and can relate to their experience. When I was getting bullied the most—seventh grade—I had a small group of loyal friends who liked me and hung out with me. They just weren’t necessarily in the same gym class.

Being concerned with including other students and walking out to protest gun violence are not contradictory. In fact, they go together. Our schools should be places where all students feel that they belong—if not in every single social group or with their entire class, then in a club or group of friends where they feel wanted and welcome. However, before our schools can be those places, they need to become places where children do not fear being murdered with a gun. Remember Maslow’s Hierarchy of Needs. [5] Which of these do you really think we should start with?

An illustration of Maslow's Hierarchy of Needs, with comments by me to show how it would apply to a school setting.
Here’s a handy visual aid, even.

.Kids and teens can be as biased and prejudiced as their parents, but they also often have very well-developed gut instincts when it comes to unsafe people—unless we shame them into suppressing those instincts. We should challenge the young people in our lives to approach uncomfortable conversations with other young people who are different from them, while drawing a very clear line between that and disregarding one’s own personal safety. We should read The Gift of Fear by Gavin de Becker [6], discuss it with young people, and then stop demanding that they ignore all the good advice in it.

We should ask ourselves, too, which images pop into our minds when we think about asking kids to “walk up” to someone they’ve excluded. Do we imagine the Mexican immigrant kids, the Black kids, the gender-nonconforming kids, the girls who got labeled “fat” or “slutty,” the boys who wear nail polish, the kids who need IEPs? Or do we imagine the white boys who give Nazi salutes and submit essays about why slavery is morally justifiable?

What labor are we asking young people to perform, here? Which problems are we asking them to solve that we ought to be solving for them? Whose voices are missing from this conversation?

And why are we having this conversation, exactly? Is it because we’re so very worried about social exclusion, or is it because this is easier to talk about than guns?


[1] https://www.cnn.com/2018/03/14/us/ryan-petty-walk-up-walk-out-stoneman-douglas-shooting-trnd/index.html

(Sidenote: I feel quite bad about trashing an idea that seems to have originated from the father of one of the Parkland victims, but unfortunately, losing someone to this type of violence doesn’t necessarily give you the psychological, sociological, or legal expertise to determine how to prevent it.)

[2] https://www.washingtonpost.com/news/education/wp/2018/02/13/a-school-made-children-say-yes-to-any-classmate-who-asked-for-a-dance-then-a-parent-spoke-up/?utm_term=.06576c7f05b5

[3] http://www.chicagotribune.com/news/columnists/kass/ct-met-best-friends-ban-kass-0119-story.html

[4] https://www.facebook.com/rebeccawald/posts/10156114680017429

[5] https://en.wikipedia.org/wiki/Maslow%27s_hierarchy_of_needs

[6] https://www.amazon.com/Gift-Fear-Survival-Signals-Violence/dp/0440226198


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Please Do Not “Walk Up” to People You Think Might Murder You

The Freedom of Infertility

Before cancer, I wasn’t sure if I wanted to have kids. I knew that I had plenty of time to decide, and that I might start to feel strongly about having them at some point. But I was committed to not having them until I felt very strongly about having them, and I was also quite certain that I have no desire to experience pregnancy and childbirth. I find the mere thought of it revolting and horrifying.

Because of that, my thoughts about becoming a parent were always murky and difficult to bring into focus. I was obviously aware that adoption is a legitimate option even for people who are able to conceive and bring a pregnancy to term. But everyone I knew–and knew of–who had adopted children had done so because they couldn’t become pregnant or get someone pregnant, or because they couldn’t do so with the specific person they wanted to have the baby with.

I couldn’t imagine having to explain to dozens of nosy people why I had chosen to adopt, and face the disapproval of all the women who believe that pregnancy and childbirth is The Most Rewarding Thing You Can Do As A Woman and would look down on me for wanting to spare my body from it. When I’d shared my feelings about pregnancy and childbirth, I was usually told that if I wanted a baby badly enough, I’d be willing to do anything, even put myself through labor.

I understand now that a lot of that is post-hoc rationalization on their part. I have no doubt that if I actually had a child, I would do anything to preserve that child’s life, even go through pain and suffering like that. But since no child yet exists–the child is theoretical at this point–I’m not willing to sacrifice very much at all. Some people really do feel that way, but I can’t love someone who doesn’t exist yet.

For a long time, these were things I thought about pretty rarely, because they weren’t really relevant. I wasn’t in a place in my life to have a baby, and I had years to get to that place if I wanted to. None of my partners have wanted to have children while we’ve been together, so the conversation didn’t come up that way either.

Then, in an instant, everything changed, and I was sitting in an exam room in a gown and my oncologist was telling me that if I want to be able to conceive later, it would be a very good idea to freeze my eggs before starting chemo.

“Would it delay treatment?” I asked.

“Yes, by at least a few weeks.”

“Does that increase my risk of metastasis?”

“Any delay in treatment potentially increases your risk, though in this case it’s a small risk and many women choose to–”

“Then no.”

You know that scene in Doctor Strange when the Ancient One strands Stephen on top of Mount Everest to force him to learn how to use his nascent magical powers? That was me in that moment. The prospect of death can catalyze all kinds of learning and insight. In that moment, stranded on the mountain, I learned that I value “natural” childbearing so little that I was unwilling to accept even a very small, oncologist-sanctioned risk for it.

The doctor continued: “You seem like you know what’s right for you, but I am obligated to warn you that you might regret that decision later.”

I said: “I may feel sad about it later, yes. But I will never regret being alive to be sad about it.”

A few weeks later, I learned that even if I’m still able to conceive after my treatment, I shouldn’t. I have the BRCA mutation, which raises my lifetime risk of developing breast cancer to about 70% compared to 12% in the general population. For ovarian cancer, it’s 44% versus about 1%. Any child I conceive has a 50% chance of inheriting this shit.

When I brought this up with my doctor, he immediately told me that they can use IVF to select eggs that don’t have that gene and selectively implant those or whatever, but that sounds like 1) a massive fucking headache and 2) something that I definitely don’t get paid enough to be able to afford. In any case, I do know that that’s not how I want to have a child whatsoever. In fact, I don’t want any needles or other medical instruments to be involved at all.

So that makes two reasons so far why I can’t/shouldn’t get pregnant: the chemo may have destroyed that capability, and I don’t want to pass my genes on. Even if I circumvent these two problems, there’s a third: in order to prevent recurrence, I will be on endocrine therapy for a decade. That means that my ovarian function is suppressed and the estrogen receptors in my cells are blocked.

Theoretically, then, I could have a child when I’m 37, after that part of my treatment is over. But at 35, I become eligible to have my ovaries removed to prevent ovarian cancer. So you can bet that within weeks of my birthday I’ll be back in the hospital for that. There won’t be a window for a pregnancy to happen.

Of course, there could be if I asked to delay that surgery, which they would. 35 is just the earliest age when they’ll agree to do it. But to me that’s just like my decision about delaying chemo to freeze my eggs: in a word, nope.

So, in a matter of weeks I understood that becoming pregnant would be impossible, inadvisable, unethical, or at least more risky than I’m willing to accept. That option summarily slid off the table. I started to consider seriously the fact that adoption would be my only practical way to start a family.

At first I highly disliked this option too. There’s a lot to criticize about how adoption works in the United States. I hated to think that I might end up adopting a baby that some mother–probably young, probably poor, probably non-white–had been pressured to give up. International adoption felt out of the question to me, for similar reasons plus white saviorism. And if we’re being honest, I’m also appalled at the idea of paying such frankly ludicrous sums of money to adopt a child who needs a home anyway. It’s not like the adoption agency is doing me some sort of favor.

And I worry, too, about having a child with an unknown genetic legacy. At least in my family we know what the dangers are. With an adopted child, how would I be able to guide them to take care of their health in adulthood if we have no idea what their vulnerabilities are?

Then again, my parents didn’t know I had the BRCA gene, either.

But in any case, these are mostly solvable problems. I can do my research to ensure that my adoption is as likely as possible to be ethical and non-exploitative. I can make sure my child’s birth parents are as present in their life as they want to be. I can, somehow, save up $30,000. I can accept that we can never fully plan for medical crises.

Once I realized this, my thoughts about becoming a parent started to lose that murky quality that they used to have. I’m still not sure if or when I want to start a family, but I’m no longer distracted by my overwhelming fear of pregnancy and childbirth. Now I can imagine what it might be like to have a baby without all of those visions being clouded by phobia.

As you can imagine, things seem a lot more positive when they aren’t preceded by nine months of suffering. I imagine welcoming a baby into my home without already being wrecked with pain and fatigue. I imagine greeting my baby for the first time with my mind clear and my body strong. I imagine weathering the sleep deprivation of caring for a newborn without already being so depleted by pregnancy and childbirth. I imagine feeding my baby without pain or discomfort. (Obviously, no breastfeeding after a double mastectomy, even if I give birth.) I imagine being able to maintain a sexual connection with my partner even as a new mother. I imagine the months and weeks before I bring my baby home to be full of celebration and activity, not exhaustion, pain, and panic.

I like the idea of meeting my child standing up and wearing clothes, not lying in a hospital bed, covered in bodily fluids with tubes coming out of my body.

Weirdly, that’s what feels natural to me. Pregnancy and childbirth is what feels deeply unnatural, grotesque, and wrong.

And now I’ll never have to go through it.

Of course, that’s ridiculous to even say, because I never had to go through it. I could’ve always chosen adoption if I wanted kids. I know that. But it would’ve been a much more complicated choice, and I would’ve been expected to continue to defend it, or at least say something about it.

Now pregnancy and childbirth are off the table, and although they were never the only things on the table, they took up more than their fair share of space on it. Now there’s plenty of space for other possibilities, possibilities that I might actually enjoy considering.


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The Freedom of Infertility

Why I Told My Clients I Have Cancer

Self-disclosure–what to share about yourself with a client, and how–is a big topic of debate among therapists. Some old-school psychologists think that you should share as little as possible, and be a “blank slate” to avoid distracting the client from “the work.” Other therapists, especially those who operate within a feminist or relational lens, tend to believe that appropriate self-disclosure can strengthen the professional relationship and move the work along.

Most agree on a few things, though–don’t share personal medical details with your clients, and don’t share anything that you haven’t fully worked through already. It’s one thing to mention to a client that you went through a divorce years ago and that there’s no shame in it and that healing will come; it’s another to tell a client that you’re actually on your way to the attorney’s office after work.

I was, until recently, completely on board with these general guidelines. Then I got diagnosed with cancer, and suddenly they didn’t work for me anymore.

Almost immediately, I dreaded having to explain my absence to my clients somehow. I didn’t know anyone in my field who’s ever gone through anything like this. Neither of my supervisors at work did, either. Most of the time when something medical interferes with work, it’s rather more straightforward than cancer treatment–for instance, a surgery. You tell your clients, coworkers, and supervisors varying degrees of detail about the fact that you’ll be out for 6 weeks, and gently shut down any inappropriate questions.

I, however, was about to start chemo and I’d be working through it. I wasn’t sure how much, and I knew that might change as I went through treatment. As it turns out, it’s uniquely impossible to be vague or coy about cancer treatment. I knew right away that if I tried to spin some bullshit about how I’d be off a few days every other week for “my treatment” and then start showing up in wigs, I would come across like I’m either ashamed of it, or think my clients are children. People know what it means when you miss work every two weeks and lose your hair.

Unable to get any clear direction from professionals with more experience, I went next to Google. Here I found a number of articles by therapists who’d had cancer. They all told their clients that they’d be “leaving this position” and referred them to other therapists. I was confused. Were they not planning on returning to work? Would they have to just build up an entirely new client base? That sounds like a lot of fun on top of recovering from chemo.

One article described a therapist processing her imminent departure with her clients and having to pretend that she was moving on to another job, and reassure her clients that it wasn’t because of them and that she really valued working with them.

Later, she received an email about her own former therapist, who had terminated treatment with her the same way. He’d died of cancer.

Ultimately I decided that this level of deception and fakery not only goes against my ethical values, but would literally be impossible for me to manage. Telling my clients I had cancer was painful enough; I couldn’t imagine having to also pretend that the cancer was actually a cushy new job. Having to apologize to my clients for leaving our work unfinished as if it had been my decision, rather than a horrible thing that happened to me.

So I went for the opposite extreme. I told every single one of my clients that I’ve been diagnosed with breast cancer and would be undergoing chemo followed by surgery. I invited them to ask me any questions they wanted about it and reassured them that I wouldn’t answer anything I truly felt uncomfortable with. Some didn’t ask for any details at all. Most asked if I felt okay to be at work. (I did.) A few wanted to know more–what stage, what type of surgery, what chemo feels like, if cancer runs in my family.

Was it awkward? Sometimes. Did it distract from the client’s therapeutic needs? Maybe, in some ways. Is that ideal? No.

The problem, though, is that therapists are in fact human, and we have human bodies that fail in the same glorious ways as everyone else. I don’t believe I could’ve continued to do this work effectively throughout my chemotherapy while actively deceiving clients about what I’m going through. I also don’t think that would make me a very good role model.

A lot of surprising conversations came out of it. One client revealed his own battle with cancer, years ago. He’d never talked about it. A few mentioned that they really ought to be doing breast self-exams because it runs in their families; I told them where to get more information and explained that when caught early, breast cancer is extremely treatable. One client, surprisingly, brightened and smiled when I told her. She explained that a beloved relative is a survivor of breast cancer several times over and that this relative is her mentor and source of inspiration.

Another client said she was glad I told her. “I’ve been working on being more vulnerable and open with the people in my life,” she said. “If you’d tried to hide this, it would’ve sent the wrong message.”

That conversation was a reminder that while therapists often keep personal information from clients in order to “protect” them or to avoid distracting them, clients may interpret this secrecy as a product of shame, callousness, or both.

That’s not to say that my transparent approach hasn’t had its downsides. It does sometimes make my clients feel awkward about sharing their own problems; cancer tends to be that thing people remind themselves at least they haven’t got, so it can be weird to vent about your shitty job when someone’s just dropped cancer into the conversation. But I always reassure my clients that 1) I’m here because I want to be, and 2) I still see their problems as valid and important even though I have cancer now. The awkwardness usually doesn’t last.

It does sometimes make things harder for me, though. When I was first diagnosed and didn’t know the staging or prognosis, I could hear the unasked question on many of my clients’ minds. No, I didn’t know if I was going to survive or not. (Even now, with chemo going swimmingly, I can tell you that I’m pretty unlikely to die of cancer, but recurrence is a thing and it could happen anytime.) I could only tell my clients the same thing I could tell myself–that I had no reason to expect the worst, so therefore I’d hope for the best.

Sitting with uncertainty is one of the most difficult things in life, and probably the most difficult thing about cancer especially. Yet it’s also one of the most important skills to develop, for me and for my clients too.

As treatment went on, I often found myself having to be a bit performative when clients asked how I’m doing. It’s true that chemo isn’t too bad and that I feel okay most of the time. But some days are very hard. Yes, there were days when I wished I’d stayed home from work, but I didn’t because I wanted to be as consistent as possible with my schedule. (There were other days when I called off even though I’d planned to be there.)

Most days, I’m not my best self at work. I’m just not. It’s just impossible. The only other option would’ve been to take all four months of chemo off work entirely, but that would’ve been worse for my clients, worse for me, and ultimately impossible. I don’t have enough medical leave for that.

So although I don’t tell my clients many details about treatment, I continue to be transparent. I’ve told them that I feel tired a lot. I’ve mentioned that chemo sometimes leaves me with bone aches, which is why I stay home a few days after each treatment. I keep a positive attitude and tell them that many chemo side effects are very well-managed with medication and that chemo isn’t what it used to be. My hope is that if any of them end up being diagnosed with cancer, or having a loved one who is, they’ll remember that, and they’ll remember not to be afraid and to ask the doctor for help if they need it.

Disclosing this to my clients a week after diagnosis–telling 40 or so people that I have a potentially lethal illness and then taking care of them around that disclosure–is the most difficult challenge I’ve faced in my professional career so far. I found myself having to reassure people about something happening to me, something I found (as most people would) horrible and terrifying.

This situation turned the usual ring theory inside out. Normally the person at the center of a trauma or tragedy is the one who gets taken care of by everyone else. But as a therapist, it’s my job to take care of my clients. Which is probably why the conversations were sometimes so raw and awkward–my clients sensed that they “should” be the ones comforting and reassuring me, but they also understood that that’s not their role. And because of the strong therapeutic relationships we’ve already cultivated, we were able to talk about that directly.

I had my last chemo treatment this past Monday, so things are going to be more straightforward from here on out. But that doesn’t mean I’ll be able to stop having conversations about this with my clients. I have multiple surgeries and other procedures in my future and it could drag on for years. I may not be able to be at work as much as my clients (or I) would like, but I hope that by being open and honest I can reassure them that help is available even when I’m not there and make sure they know how much I wish I could be there with them.

Over the past four months, I’ve had to radically redefine what professionalism and appropriate self-disclosure mean to me. As it turns out, vulnerability isn’t just good for my friendships and partnerships; it’s good for my professional relationships too.


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Why I Told My Clients I Have Cancer

Where I Am and Where I’ve Been

Closeup of a frozen creek.
A scene from my favorite winter hike so far. Also an apt metaphor.

For weeks now I’ve been begging myself to write something, anything. But the words just don’t come.

It’s not that I don’t care anymore about the things I used to write about. Though I do click away from the news a lot of the time, I know I care, it’s just that my brain is usually too full with a buzzing sort of panic about my impending loss of autonomy, mobility, dignity, bodily integrity. That’s when I’m not panicking about simply dying.

I think about very little else anymore. The surgery. Researching everything I can about the surgery. Looking up and buying things for after the surgery, special clothes, pillows, anything to reduce my dependence on other people. Writing down lists of questions to ask some doctor at some point. I’m not always sure which questions should be directed to whom–the medical oncologist, the surgical oncologist, the plastic surgeon, the anesthesiologist, a social worker. Recounting to my parents my meticulous list of boundaries to retain whatever control I can over this impending horror–instructions about when they can and can’t see me in the hospital, when to give my phone back to me, who can touch or see what or how. Listing activities I may be able to do while I’m recovering–reading, writing, knitting, gaming, drawing–and making sure that I acquire everything I need for all of these things just in case something sticks. Planning out outfits that I will be able to dress myself in, independently. Asking the surgeon questions like, “Are you saying you don’t RECOMMEND that patients do this on their own, or just that they may find it uncomfortable and want to ask for help?” Because I will take the discomfort.

It has turned into a full-on obsession, and some part of me realizes it’s not healthy, but at the same time it’s also a coping method. It is easier, and probably healthier, to make packing lists than to let myself “be with” the fear, and imagine over and over being ripped open and stitched up again with tubes coming out of places they shouldn’t be and stuff that’s not supposed to be inside my body being inside of it and stuff that was supposed to be in there not being there anymore. And to be clear, I certainly imagine plenty of that. It comes completely unbidden. It’s a wild, untamable, primal fear. I’m like an animal being led to slaughter. My mind flings itself against the bars of its cage, over and over, despite the damage it does.

This is what it looks like to face down your worst, most paralyzing phobia. I used to say, half-jokingly, that if I ever required the sort of surgery that involved general anesthesia and opioids, I would refuse and simply die. Life called my bluff. I’m not dying, at least not yet.

Plenty of people have pointed out that there’s something maddeningly counter-intuitive about treating early-stage breast cancer, and that’s that it often feels like poisoning and mutilating a perfectly healthy body. I had no symptoms aside from an innocent-looking lump that nobody, not me and not the doctors who initially observed it, really thought could actually be cancer. Now that lump is gone thanks to an overwhelming response to the chemo, and I have to face the idea of having part of my young and tumor-free body hacked off so that I don’t die later. There’s also the thought that if I hadn’t noticed the lump, I might very well be dead now, or rapidly getting there.

The thought keeps going through my head: “And for what?” But I know for what. It’s so that I don’t die. That’s literally all. And though a double mastectomy doesn’t guarantee a cancer-free future, it at least offers a strong hope for one. Without it, that hope would be quite frail.

At the same time, and perhaps because I never exactly felt “sick” or thought of myself as sick, it feels like I’m sacrificing an awful lot just to have what I always naively assumed I’d have anyway–a reasonably long and healthy life. The surgery doesn’t feel like a treatment; it feels like the disease itself. I’m not healing from cancer, I’m healing from something I elected to have done to me, for reasons I can’t quite remember some days.

And yet, being the sort of person I am, I never seriously considered not doing it. Anything other than the double mastectomy seems like a betrayal of who I am, not to mention a betrayal to my loved ones who would have to spend the rest of their lives, like me, fearing recurrence. None of us deserves that kind of fear.

The surgery is a sacrifice that present me is making for future me, for some version of myself I can’t quite envision yet but will have to eventually become. That person will have accepted her new body, or at least gotten used to it. That person will, like the women in my support group, joke cheerfully about the awkward things that happen when you have no sensation left in your chest anymore. That person will maybe date new people again and find some way to explain the breasts, or not. That person will still think about cancer but not every single day.

That person will no longer believe that she’d rather die than get surgery. That person will also be much older than her years.

Don’t get me wrong, this isn’t the way I’d recommend doing exposure therapy for your medical phobia. But this is the way I’ll have to do it.

This is my longest, darkest winter, the winter time stood still. You don’t move forward when you’re fighting something like this; you’re just planting your feet, pushing back, and hoping not to be thrown off the ledge. My career is at a standstill—I have no idea when I’ll get enough supervision hours for independent licensure now. I forget the last time I met a new interesting person; it used to happen every week. I exercise and yet my body grows no stronger. I don’t really get to try and learn new things anymore. Everything I’d planned to do—practicing on the motorcycle, starting a vegetable garden, volunteering at the humane society or the botanical garden, planning a future coaching business, looking into selling my bread at the farmers market—is now delayed indefinitely.

That I knew something like this was probably coming doesn’t help much. For the two years leading up to my diagnosis—the two years since I moved to Columbus—I loved my life so much that I knew it couldn’t last. “Something’s going to happen to fuck this up,” I thought. I’d spent most of the first 24 years of my life pretty miserable, and now I finally wasn’t, and it couldn’t last.

And it didn’t.

And yet, unbelievably, it also did.

There is so much joy still in my life, if not every day then enough to carry me through. I spend entire days with friends sometimes, or else catching up on my library books with the cats cuddled up against me. My parents and sister and I laugh till our sides ache as my brother demonstrates parkour on the lawn in front of my house. Letters and cards arrive weekly in the mail from distant friends, some of whom I’d honestly thought had forgotten me by now. The teapot whistles urgently on the stove. Snow falls, and then rain, and then more snow again. There’s an orchid show at the botanical garden, and I went with my camera, struggling to kneel to take the pictures and stand back up but doing it anyway. It’s 8 degrees, but we go hiking anyway. The regulars at my yoga studio are starting to recognize me, and to know what the hat means. My older brother in London sent me a Switch for my birthday; now when I close my eyes I see beautiful scenes from Zelda instead of body horror. My body aches unbearably sometimes from chemo, so people bring me things. My oncologist calms my panic with his presence the moment he enters the exam room. A coworker finally learned to text just so she could check in on me when I didn’t answer the phone.

And, outside, the days slowly lengthen, and the January chills are gone. Three seasons will have passed by the time all of this is even on its way to being over. The mint in my backyard will have grown back. It has a way of enduring.

As it turns out, I have a way of enduring too.


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Where I Am and Where I’ve Been

Everything You Ever Wanted to Know About Having Cancer

[Content note: medical stuff]

A few weeks/months ago (what is time, anyway?) I invited my friends to ask me absolutely anything they wanted about what it’s like to have cancer. The result was this epically-long Q&A, which was actually quite fun for me to compile. Folks have been saying it’s useful and interesting for them too, so I decided to make it public.

If you have questions you’d like to ask and you know me well enough to know how to reach me, feel free to send them my way and I’ll answer them when I update this. Ask anything you want; if I’m not comfortable answering, I won’t. But you can probably tell from this article that there’s not much I’m uncomfortable answering.

The first set of questions is dated November 23, 2017, so some of the details of my treatment have probably changed.

Continue reading “Everything You Ever Wanted to Know About Having Cancer”

Everything You Ever Wanted to Know About Having Cancer

“I was such an asshole back then”

If you are a woman or nonbinary person who dates men, you’ve probably dated a man who, when talking about his past relationships, admitted to you that he “used to be such an asshole.”

Sometimes this is accompanied by a story, told shamefacedly, about how he was manipulative or even coercive in his past relationships, or how he made his female partners do all of the emotional labor in the relationship (although he rarely uses this term). Sometimes untreated mental illness is part of the story, although of course, mental illness doesn’t make people assholes. How they choose to deal with it sometimes does.

Regardless of the particular details, many men in their 20s and 30s have these stories. In fact, I think this describes all of the men I dated except for the ones who were still assholes at the time I dated them.

I was talking about this with a friend recently and we started asking ourselves how exactly all of these men ceased to be assholes. How did they figure out that their behavior in their past relationships was wrong? Who told them?

The answer is as obvious as it is depressing: usually, the women in their lives told them, either during the course of the relationship or while breaking up with them. Often, the lesson didn’t sink in until the relationship was long over. I know a few men who learned to be better by reading blogs like Dr. NerdLove and Captain Awkward, but for the most part, it takes a person you love pushing you to do better.

It brought to mind all of the emotional labor I’ve done with men in my own life—telling them to stop comparing sexual assault to totally asinine things that have nothing to do with structural oppression; pointing out to them that every time I disagree with them, no matter how mildly, their tone almost instantly becomes irritated or even resentful; reminding them that “no” is a complete sentence and I don’t owe them further explanations; explaining to them that they can’t refuse to be in a committed relationship with me and then get upset at me for dating other people; telling them to stop pressuring me to have an orgasm like it’s a referendum on their sexual abilities; and so on.

How many of these men now tell their girlfriends with an embarrassed chuckle that they used to be “such an asshole”? How many of them give credit where credit is due?

In our conversation, my friend and I laughed mirthlessly as we realized that so many of our relationships with men involve us essentially preparing these men for future relationships with other women. And our own loving partners were prepared for their relationships with us by other women, too. It’s a cycle of emotional labor that’s rarely acknowledged.

If you are a man who dates women who’s ever found yourself reflecting on past relationships and realizing that you used to be an asshole, I want to invite you to ask yourself these questions:

1) How were you an asshole?
2) How did you learn that you were being an asshole?
3) How were you able to change that behavior?
4) Who helped you?
5) Have you thanked that person?

Obviously, if you don’t think that person wants to hear from you, then don’t do #5. But most of the time, your exes would probably be relieved to know their labor had an impact. I know I would be, when I think about all the thankless hours I spent calmly explaining things to my male partners only to have them respond with “ok, fine,” and then years later tell their new girlfriends what assholes they used to be.

I forget who said it now, but I saw a tweet once along the lines of “behind every ‘woke’ man is an exhausted feminist.” I believe it.

Whether or not you ever go back and thank the people who made you who you are today, I would love to see more men reframe the way they approach this conversation. Instead of “I was such an asshole back then, lol,” I would love to hear, “I used to be a really difficult person to be in relationship with, but my ex taught me a lot about how to be better and I’m in her debt for that.”

None of us become better people by accident. We have to be taught—by parents, by friends, my partners, by writers whose work we read. Yes, you make an effort too, and that matters. But someone helped you make that effort, and they deserve recognition.


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“I was such an asshole back then”

How to Avoid Giving Your Cancerous Friend a Panic Attack: An Introduction to the Psychology of Pain

Okay, maybe this is kind of turning into a Cancer Blog.

[Content note: medical stuff]

One of the first things my oncologist said to me at the beginning of this whole wild ride was, “Don’t Google.”

Wise words. For the most part, I haven’t. I’ve used some well-vetted websites (such as the American Cancer Society) to help myself prepare for things, but I’ve never intentionally sought out other types of medical information and narratives.

However, Google being how you access legit medical websites as well as blogs, things have nevertheless found their ways onto my screen that shouldn’t have. Some of this was probably unavoidable; some of it definitely wasn’t, especially when people sent me links or I clicked on them.

There’s a lot I didn’t understand about the psychological side of medicine until recently, but once I did, things started to make sense and I started to notice things I’d never noticed before.

For instance, well-trained doctors and nurses who are not characters in TV shows or moralizing children’s books never say “THIS WILL HURT A LOT.” Actually, they don’t even say, “This will hurt.” They say, “You will feel a pinch.” They say, “There might be a burning sensation at first, but it’ll go away in a few seconds.” They say, “You’ll feel a sting when I numb the area, but after that you won’t feel anything. If you do, tell me.” They say, “Some patients find this uncomfortable. If it’s too much for you, let me know and we’ll see what we can do.”

I started to notice that as much as possible, they stay away from words like “hurt,” “pain,” and anything vague or emotionally-charged.

Then I noticed how my doctor responded when I asked about pain management post-mastectomy. He said, “We use a multi-modal pain management protocol. You get four different medications, one of which is an opioid. We find that when patients return for their one week follow-up, the majority of them voluntarily return the opioids to us, saying that they only took a few of them or never needed them at all.”

Next I asked about chemo side effects. He said, “The main side effect patients experience nowadays is fatigue. Everything else is very well-controlled with medication, so if you’re still experiencing nausea or other side effects, let us know and we’ll add medications to control it or reduce the dose of the chemo. Even with fatigue, it varies. The best way to counteract it is exercise. Try to get yourself moving at least a little bit every day. Most of my patients continue to work during chemo, if not full-time. One of them even ran the Columbus Marathon during her treatment.”

Notice what’s going on?

Whenever the question of pain, discomfort, and side effects comes up, good medical providers do several things:

1) They are honest about what most patients can expect, but
2) They don’t focus on the negative aspects or use emotionally charged language to describe it
3) When most patients can expect a positive outcome, they emphasize that
4) When discussing pain or other side effects, they quickly shift focus to what THEY plan to do to address it.

This is very important, and that’s where the psychology of pain comes in. Research shows that expectations of pain play a huge role in our subjective experience of pain—expect something to hurt a lot, and it probably will; expect it to be tolerable, and it’ll hurt less. That doesn’t mean you’re going to magically feel no pain—we have nerves, after all—but there’s a degree of subjectivity to it and we’re learning that it’s a rather large degree.

Unfortunately, once you’ve become convinced for whatever reason that something is going to be very painful, it’s very difficult to un-convince yourself of that, because at that point your brain’s fear response has sort of taken over. That’s why it’s important to manage what information you receive beforehand so you don’t end up with an expectation of intolerable pain.

And that’s why my doctor told me not to google stuff.

Doctors don’t want patients freaking themselves out with graphic descriptions of painful procedures not just because they want to help you avoid panic attacks and unnecessary stress. It’s also because expecting severe pain can lead to experiencing severe pain. More pain means more pain medications, a greater risk of complications and addiction to those pain medications, a longer recovery time, and a generally all-around shitty experience.

A wonderful book I just read, What Patients Say, What Doctors Hear by Dr. Danielle Ofri, describes this phenomenon and cites research dating back decades. From a Washington Post review of the book:

We’ve known for decades that doctors who offer empathy, build trust and set expectations help their patients fare better. As far back as 1964, a study conducted with abdominal-surgery patients illustrated what Ofri calls the “demonstrable effect of the simple act of talking.” Before surgery, half of the patients were visited by an anesthetist who said pain afterward would be normal and would last a limited amount of time, and explained how patients could relax their muscles to lessen the pain. These patients needed half the pain medication of others who didn’t receive a pain talk. If we are an overmedicated nation, better communication would seem an easy and cheap way to relieve that burden — except that listening takes time, and doctors don’t usually have that.

If doctors don’t always have the time to talk to patients about pain in this calming, practical way, we now have the internet to step in and fill the gap. Sometimes it does this well, but often it does it very poorly.

We all know cognitively that you’re likely to find a disproportionate number of negative stories online because people who have a positive or neutral experience are less likely to take the time to describe it, whether that experience is with a restaurant, lawn care service, book, or medical procedure. We know this, but when you’re scared about your upcoming surgery and you stumble upon some first-person accounts, you’re not thinking of it that way and you can’t think of it that way. The fear response takes over.

Even if the experience being described is quite typical and probably fair to expect, it still does patients like me few favors to read those descriptions. First of all, subjective experiences of pain are, well, subjective. One person’s terrible pain could be my absolutely tolerable pain, and there’s no way to know it. Pretty much everyone has pain after surgery; that’s to be expected. But reading about it can still harm me by causing me to expect more pain than I would’ve otherwise had.

Different online sources also have different motivations. I’ve read a few blogs by cancer patients and found most of the accounts there to be pretty neutral and even-handed when it comes to describing cancer treatment. Yes, it sucks, but since these bloggers were documenting their journeys overall, they also described the parts that were okay, and the parts that were just boring, and even the parts that were interesting and better than they expected.

But as soon as you get into first-person narratives being published on websites like Buzzfeed and Slate and whatever, you’re going to see a much more skewed version of things because, as I’m furiously finding out, people love a graphic, miserable cancer narrative. People eat that shit up. Painful medical procedures, disgusting post-op symptoms, bizarre side effects, the works. It gets clicks. It infuriates me.

Even if those experiences are very much real, it doesn’t do someone like me any good to read it. Some patients justify it by claiming that it helps us be better “prepared”—I used to do this too—the fact is that it doesn’t make is better prepared. It makes us less prepared, because it makes us expect the worst and therefore ultimately have a worse experience.

So, when you come across these “raw” and “honest” cancer narratives and you feel the urge to send them to your friend with cancer to help “prepare” them or because you think they might find it validating, take a pause and ask yourself 1) who this is primarily being written for and 2) how exactly this will prepare your friend for what they’re about to face. Put yourself in their shoes. Imagine you’re going through treatment for a deadly illness, and you don’t know if the treatment will even work or how much damage it’ll do to you in the process. Would reading this material help you? If not, it won’t help me either.

What I do find helpful is neutral, matter-of-fact explanations of what I can expect. The best of these have come from my hospital itself, which makes tons of handouts available to patients. Here are some pages from the one they gave me about mastectomy and reconstruction surgery:

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Websites like the American Cancer Society, the National Breast Cancer Foundation, and BreastCancer.org also do this well. When I do google, these are the websites I usually click on.

And in terms of speaking to people, two conversations have made a big difference in calming me down and setting more positive expectations for surgery. One was the appointment in which my doctor told me about how most of the opioid medications get returned within a week. The other was when my mom, who had a c-section twice, told me that post-surgery pain just felt like a very strong muscle ache, as if you’d worked out super hard the day before. That was very reassuring. I am no stranger to strong muscle aches.

In my social circles, we generally value sharing and listening to people’s personal experiences, and we emphasize that everyone’s experience is valid and important and so on. I agree with this, generally. But right now, as I’m going through cancer treatment, everyone’s personal experience is not important to me, and I shouldn’t read and give credence to something just because it’s someone’s personal experience. Doing so can not only give me panic attacks, but literally cause me to feel more pain.

So for the time being, I’m trying to stay away from negative and emotionally-charged accounts of cancer treatments, and my friends can help by not encouraging me to read them. If necessary, I’ll “prepare” myself by talking to my doctors. They have yet to make me regret it.


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How to Avoid Giving Your Cancerous Friend a Panic Attack: An Introduction to the Psychology of Pain