War on Patients

For all the various experiences I’ve had as a disabled person, a long distance move is a relatively new one. I’m lucky in a lot of ways because the place I’ve moved to isn’t completely new. Although it has been 13 years since I’ve lived here, my parents have been here that whole time. As a result, I have access to certain resources that I wouldn’t have otherwise had. Among these resources is faster access to a family doctor – the same one that has served my family since I was a kid.

I’m lucky because that’s not the case for most people. There is currently a pretty significant shortage of Family Doctors or General Practicioners as they’re sometimes called. Your GP is meant to be the point person of your medical care. They’re responsible for managing the big picture of your overall health – receiving updates from all your specialists, all test results, providing referrals to specialists, and in many cases managing the vast majority of your prescriptions.

As part of my move, I had to transfer my prescriptions from Ottawa to here. Since I was using the same chain of pharmacies, I didn’t much foresee a problem. That’s because I didn’t know about a law that prevents pharmacies from transferring prescriptions that are categorized as narcotics. It’s part of the ongoing war on patients masquerading as the various wars on drugs. The problem is that narcotics are the recognized treatment for a variety of different conditions including ADHD. If I needed a refill of my medication, in this case Vyvanse, I would need to find a family doctor and get a brand new prescription.

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War on Patients
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How Can Pain Cause Weight Gain?  

For years the assumption has been that “obesity” leads to pain. Many patients have had the experience of looking for explanations of pain issues, only to have the problem never investigated and told to lose weight instead. Then years later, find out that their pain was actually the result of an underlying issue, made worse through a lack of early treatment. You might have seen a comic or visual joke involving a visibly injured patient and the doctor saying “have you tried losing weight?”

In my book, Young, Sick, and Invisible, I discuss how this same trope was directly responsible for my own autoimmune conditions being ignored long enough to cause long term and severe disability and damage.

In a recent post, I had responded to an intentionally insulting comment with a long explanation of how their assumptions about my use of a mobility aid and my weight was influenced by a series of misunderstanding about obesity, pain, and disability. Included among this explanation was the statement that “obesity” or rather weight gain, can often be a symptom of chronic pain rather than it’s cause.

In response to this statement I received a question, and while the phrasing made it clear the comment wasn’t actually a legitimate inquiry but another chance for the commentor to engage in fat shaming, the underlying question sparked my interest.

Heavily edited, the question was this:  

“I understand how obesity can contribute to pain by putting stress on joints, but I don’t understand how the opposite can happen. Can you Please explain it to me and help me understand? How does Pain cause Weight Gain?”  

To begin, the concept of “obesity” is widely misunderstood and is oppressive in and of itself. As a knowledgeable friend recently explained it –  The word is based on the Body Mass Index scale (BMI) where the ratio of height and weight was determined and everyone who scored within certain parameters was considered as having a healthy BMI while anyone whose BMI was above this range was deemed obese. A person who had very little body fat, but was very muscled, especially in relation to their height, would be classified as obese. In fact, since muscle tends to weigh more than fat, a body builder is more likely to be classified as obese than what most people consider to be representative of an “obese” person.

The concept that obesity is synonymous with fatness is a misunderstanding that has become accepted as a standard, and is used by doctors to excuse their own medical negligence when it’s the result of internalized biases regarding fatness.

What’s more, more and more evidence suggests that body fat percentage is not actually a reliable indicator of an individuals health, nor is there actually a reliable standard as to what fat percentage can be considered healthy and which is unhealthy. That rather fat distribution and percentage is really just a variation in body type much the same way that shape, height, etc. are.

The attempt to pathologize fatness ultimately makes as much sense as claiming that a certain eye colour is an indicator of overall health. Contrary to popular belief, just being fat is not in itself unhealthy.  A fat person can be just as healthy as someone who is considered slender. What is unhealthy is when there is a sudden significant increase or decrease of body fat percentage outside of regular growth and development. In the specific case of an increase in body fat levels, what is unhealthy is when it is spurred by malnutrition, stress, and immobility which in addition to spurring weight gain also have a measurable negative impact on blood pressure, blood sugar, and arterial plaque. Even in this case, it’s not the weight gain in particular that is of actual medical concern, but rather the specific effects on those measured stats.

The medically accepted myth that fatness all by itself is unhealthy is another example of the fallacy that correlation signifies causation. Additionally, this accepted fallacy has had significant impacts on our social understanding of body size and health. 

A more accurate way to look at the connection between a high body percentage and pain would be that it can contribute to pain when an underlying problem exists, and when the specific individuals natural body fat percentage is significantly lower than what it is now. There are many people out there who are fat, who not only experience no pain whatsoever, but also have perfectly healthy stats.

In fact, the social convention of proper weight is so distorted, that the little abdominal bulge many women spend years trying to eliminate, is actually not the result of fat but is actually their internal organs pressing up against their abdominal wall.

Weight on it’s own, doesn’t cause pain. Rather, in an event that someone has an underlying condition that may cause pain, carrying more weight than their body naturally would under optimal conditions, can put additional stress on the injury site and make pain more intense. The impetus for the pain however, is still the initial underlying injury or condition.

What many ignore is that pain and its related symptoms can actually be the cause of accelerated weight gain and that the best way to address both is to treat the underlying cause of pain and to treat the pain itself.

How can this be?

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How Can Pain Cause Weight Gain?  

I Can’t Move On, It’s Not Over Yet

I cant move on, it's not over yet imposed over a blurry picture of a frozen winter landscape
The type of writing I do, the type of people I connect with, I tend to come into contact with a lot of people who are struggling with medical systems. Because of my own experience navigating these same systems, as well as because of the way some of my areas of privilege align – and sometimes not even privilege but just random chance that turned out well, I have also been finding myself more and more acting as a patient advocate for people.

This can mean helping someone find a doctor, helping them come up with questions to ask or ways of phrasing things, making phone calls from location to location, and sometimes even showing up to physically advocate for someone.

There are many people who I have been able to help in some small way and it was enough for them to be able to move out of trouble enough not to need me anymore. There is one core group of people, however, who no matter how hard I advocate, what strings I try to pull, what privileges I bring down to bear, I never seem to manage to get through to their primary caregivers enough for them to start receiving the help they need. Continue reading “I Can’t Move On, It’s Not Over Yet”

I Can’t Move On, It’s Not Over Yet

What Are the Chances?

CN: Discussion of Statistics in relations to disability, other social issues, sexual assault, and abuse.

There are times when I am talking to someone about my life- about the fact that I’m scared of new proposed laws making it harder for me to survive in Ontario, or about how I’m one particularly unlucky day away from being homeless – when I get the feeling like the person I’m talking to thinks I’m exaggerating. They get this look on their faces that makes it clear they’re just humoring me by not pointing out how ridiculous I’m being. Meanwhile, I’m already minimizing how severe my situation is out of fear of being accused of exaggerating. Worse still, my circumstances are relatively minor compared to that of many of my friends and readers. 

When they don’t automatically dismiss what I’m saying as being hyperbole, the people I speak with assume that my case is rare – an exception. A circumstance not worthy of planning against because it’s unlikely to happen again. And yet? Every day I meet someone new in the same type of situation I find myself in. It’s become so textbook, some people look at me as though I’m performing magic when I manage to guess the ridiculous circumstances they find themselves in or repeat almost verbatim what they’ve heard from doctors, therapists, or other people.

It’s a matter of framing, of perspective.

To someone in the mainstream, what is happening to me must be the result of either something I did wrong, or something extremely rare, or impossible. It seems like the probability of all the things going wrong that go wrong happening seem impossible.

What are the chances that every relationship you’ve been in is abusive?

What are the chances that so many of your doctors end up incompetent? That so many doctors end up holding biased opinions?

What are the chances that everyone around you is so terrible? Doesn’t it seem more likely that you are the problem? Statistically speaking that is?

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What Are the Chances?

GUEST POST: Why It’s Hard to Reveal My Disability to Strangers

By Kella Hanna-Wayne

A dancer on a dark background with title of post in white

CN: ableism, chronic pain

With every new person I meet, I have to gauge just how much to tell them about my disability. I try to be as open as possible about my health issues because I want to reinforce the idea that people who look like me- young, relatively fit, no noticeable limitations- can also be disabled. But being open about my disability means opening myself to potential scrutiny of my body, my diet, my medications, my exercise routine. Any decision I make about my physical health becomes fair game for intrusive questions. Until I get to know a person better, I have to assume they will default to treating me as if my health history is in the public domain.

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GUEST POST: Why It’s Hard to Reveal My Disability to Strangers

The Emotional Labour of Asking for Help

I think one of the hardest things for me to learn after I became disabled, was when to slow down, and when to ask for help. We talk about the energy cost that comes with living with chronic illness, but accepting it is still a process. Coming to terms with the fact that you can’t do certain things is hard. You’re determined not to let being sick change you, but you have no choice. You have to. Because you are different now. There are things you cannot do, and moving on and becoming yourself means coming to terms with that.

What many people don’t understand is that it’s not a onetime thing.

It happens again every time we have to ask for help.

Society tells us, as well as everyone in our lives, that we are a burden and that that is all we can be. No matter how much we learn that it is not the case, it is still hard not to internalize that message. The message is passed along in the media around us – with disability being presented as the worst possible thing that can happen to anyone, and in the reactions of people around us.

When Alyssa and I were together for example, it was not uncommon for members of her family to question her as to what good our relationship was with me being so broken. When she had called her mother to announce our engagement, what should have been happy news was instead met with a sense of mounting horror and dramatic exclamations of “no, no, no”. Later when discussing it with her father, the concerns about tying your fortunes to a disabled person came up again. When I was with my ex before Alyssa, so many people would tell me over and over again that I was lucky to have found someone who was willing to stay with me. I think the worst however, was when a friend who also happened to be Alyssa’s partner tried to talk me out of getting a dog to train as a service dog for myself by bringing up how much Alyssa already had to do around the house.

Although it was never flat out said, the implication was obvious. I was a burden.

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The Emotional Labour of Asking for Help

Guest Post: Suffering Stream of Consciousness

The following is a stream of consciousness poem by a friend of mine who has been dealing with overwhelming medical negligence for several years, most recently blinded by a doctor ignoring medical protocol for a medication they put her on. These are her thoughts in the midst of trying to process her most recent medical traumas and yet another severe pain flare that has had no help from doctors. 

TW: Discussions of Death, Abuse, Suffering, Suicidal Ideation, Medical Neglect, Troll Brain thoughts. These are unedited troll brain thoughts as well and so not controlled for slurs and internalized prejudices.

written by friend Sophie; after spending 9 hours in an endless sob session and panic attack before being given a clonazepam and sitting down to write this as the clonazepam started to calm her down.

I am dying.
Continue reading “Guest Post: Suffering Stream of Consciousness”

Guest Post: Suffering Stream of Consciousness