Bathroom Matters

I know almost immediately that it is going to be a bad one. It’s always preceded with this pain that happens just below my tailbone. It’s not pain exactly, but it’s the closest description to the sensation I have. Sometimes, it happens after a fairly severe stomach cramp, sometimes I feel the cramp in my back. I know I don’t have long to find the bathroom.

If I’m at home I just run down the hallway to the bathroom, but if I’m out and about, the search may be more involved. If I’m driving, it means pulling over at the first place that is likely to have a public restroom. Fast food restaurants are the best. They usually have decent bathroom access, and few of them have locks on the door. Sometimes gas stations work, but they’re not always reliable. I pull over and I run inside, and if I have to, I ask to use the restroom.

If I’m not driving, but I am out somewhere, then I run for the nearest public restroom. Chances are I know of several within my vicinity.

I carry a map in my head of where the nearest washroom is, to the best of my ability.

I do this, because I know what it feels like when I don’t find the washroom in time. I know what it feels like to lose bowel control and the feeling of soiling myself. The whole experience is unpleasant. Although the spasms in my bowels prevent me from being able to stop it, it doesn’t mean that it comes without pain. The always sensitive skin of my bum will often burn or sting.

Then there is the burning sensation of embarrassment.

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Bathroom Matters

How to Talk to your Doctor about Digestive Issues

I’ve had a lot of people come up to me and ask how to bring up digestive symptoms with their doctor. It’s easy to have problems dismissed when talking to doctors, especially for those people who are perceived as being female or are female presenting.

I don’t have all the answers. I still have trouble getting taken seriously by some doctors, despite everything that is on record as being wrong with me physically. I do have some suggestions, that I have learned from my own experiences.

Please note, I will make mention of bowel movements and bodily fluids, so please keep that in mind while reading.

  1. Keep track of your symptoms

Questions you are likely to be asked regarding pain:

What type of pain? Where is it? Does it get worse after eating? How long does it last?

Questions you are likely to be asked regarding blood or stool:

What is the consistency (Bristol Stool Chart)? How much blood? Was it dark red? Clotted? Pink and watery? Does your stool contain what looks like coffee grinds?

By having answers ready for these questions, you can move the process along more quickly since the doctors will have a better idea of what they are looking for.

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How to Talk to your Doctor about Digestive Issues

First Amazon Reviews!

Pictures of First Amazon Reviews. Text below

My Book Young, Sick, and Invisible has it’s first reviews on I am so excited to hear from people who have read it, and the people who have contacted me to share their stories.

If you’ve had the chance to read the book, please let me know what you thought. I would love to hear from you!.

“I am a person with a chronic illness that has left me disabled. Ania’s book not only perfectly described the facets of living with disability, chronic pain, and chronic illness, she also touched on how it can be for friends and loved ones of such a person. She exquisitely describes in terms anyone can understand – whether they are a patient, friend or loved one of a patient, or just a regular person wanting to learn about the struggles of those of us who are ill. This book was devoured in days and something I feel everyone should read, especially if you know a person with chronic pain, a chronic illness, and/or a disability.” – Kacee L Cole

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First Amazon Reviews!

That Doggy in the Window

Over the last week, I’ve been taking my girls Tsuki, my 11 year old Schnoodle, and CJ, my 8 month of Chihuahua to the dog park on a daily basis. They love it, they get great exercise, and CJ gets to work on being well socialized with other dogs. Today’s trip was planned to coincide around a tutoring appointment Alyssa had. I would drive her to her appointment, go pick up a free drink from Starbucks, hang out for a bit, before picking her back up again and heading to the park.

CJ the Chihuahua

Grey Schnoodle Looking skeptical
Everything was going as planned until Crohn’s once again got in the way. I had to go to the bathroom, but had both my dogs in the car. Stuck and desperate, I blasted the air conditioning until I parked, then wrote out a quick note for any worried passersby: “Bathroom Emergency. Dogs have fan. Back in < 2 min”. I cracked the two front windows about an inch, enough to let some air flow, but not enough to let my small dogs escape into traffic. In addition, I left the doors unlocked, just in case.

I ran for the bathroom and did my business. From where I was, I could hear it when Tsuki, and then CJ started barking loudly. I finished up as quick as I could, all told about a minute, maybe a minute and a half. As soon as I got out of the bathroom I was accosted by an older woman, who asks me if those are my dogs.

I could already sense that this was about to be trouble, but I answered yes.

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That Doggy in the Window

It’s All in Your Head:

The false dichotomy between physical and mental illness

It used to be thought that different illnesses were the result of demons and evil spirits. In the bible for example there are instances of epilepsy that are treated as demonic possession. As physical explanations were found for different disorders, the supernatural explanations were abandoned in favor of scientific ones.When it comes to mental health disorders however, physical explanations are harder to grasp and find. Not because they don’t exist, but rather because a lot of brain related research is either not possible with our current technology, or must be undertaken with great care for ethical reasons.  As a result, our society has created a separation between physical illnesses and mental ones.

On some levels, this separation make sense. When we think of physical illness or disability, we think of some physically embodiment. Take Crohn’s for example: with the right equipment one can point to the inflammation and ulcers in my intestines as an explanation of why I am feeling the way I am feeling. With mental illness, however, a lot of times we are dealing with something a bit more intangible: emotions and thoughts.

This separation is a false one however, that actually creates a lot of misunderstanding and harm. Because we see mental illness as dealing with something intangible like emotion, there is a social perception that mental illness isn’t real. That it is “all in your head”.

The truth is that mental illness is as much a physical thing as any other illness or disability. The brain is as much a part of the body as a leg or intestines. Depression, anxiety, and other such conditions may manifest themselves in part as emotions and thoughts, but those are expressed symptoms of underlying conditions in the same way that pain is an expression of inflammation or injury.

Moreover, it ignores the fact that all perceptions are “in our head”. If you consider pain, for example, while our bodies processes the injury causing the pain at the point of injury, the actual experience that we call pain is processed in our brains. This doesn’t mean pain doesn’t exist. In fact, we know that pain not only exists, but it is necessary for our survival. We know this because of individuals with CIP (congenital insensitivity to pain), a condition where people cannot feel physical pain. People with CIP need to consistently measure their body temperature and be very careful because it is possible for them to injure themselves, like break a bone, without realizing it.

Every tactile experience, every visual one, every auditory one is processed “in our heads”. If you say that mental illness isn’t real because it is “in your head” you are essentially saying that every experience we have isn’t real. Our whole lives are lived in our heads.

There are physical symptoms of mental illness as well. Many people who have depression experience joint pain, as well as fatigue. Anxiety can cause your blood pressure to spike, can cause chest pains, nausea, acid reflux, and a whole host of other symptoms. There is absolutely a physical component, so treating it as if it is something separate ignores important aspects of mental illness.

Moreover, treating mental illness as separate from physical illness or disability, ignores the fact that physical disabilities and illnesses often occur in conjunction with certain mental illnesses. Specifically, many people with disabilities have more risk factors for depression, anxiety, and PTSD. This can be the result of the imposed social isolation that many people with disabilities experience, or in some cases may be a result of their illness. For example, Crohn’s Disease, in addition to the pain and physical symptoms that can increase the risk of depression, the inflammation of the intestines can also lead to a lower absorption of Vitamin D which can result in depression.

Because physical and mental illness are treated as separate, those of us with disabilities are not given adequate access to mental health care. In an ideal world, every person with a chronic illness or disability would be given access to a mental health professional who would manage their mental health in conjunction with their physical health. The connection between the two would also make it easier to argue for social contact as an accessibility need.

The way the world is set up now, people with different types of disabilities experience social isolation as a matter of course. This can be as a result of symptoms, or often as a result of insufficient accessibility. Because mental health and physical health are seen as separate, the idea that disabled people are prevented from being able to socialize effectively due to barriers such as transportation or even just on-site accessibility, is not seen as a big deal. Government officials see closing down programs and businesses that encourage and enable disabled people to socialize as risk free. People feel the need to vandalize playparks that are set up to be accessible to disabled children.

The false dichotomy is actively harmful to all disabled people. It enables people to ignore the needs of the mentally and the physically ill. It is meant to divide and shame. It is meant to pit us in false competition with one another, in the hopes that it will distract us from the systemic ableism that is so ingrained in our society.

It’s All in Your Head:

Interview for Bi Any Means

I sat down with Trav Mamone of Bi Any Means to discuss my book, my new vlog, disability activism, atheism, and more. You should take a listen if you get the chance.

Listening through the podcast I realized that I accidentally used  an expression I’ve been trying to eliminate from my vocabulary because of it’s ableist implications. A good reminder that even people who care about these issues make mistakes and it is up to us to make amends when we do. To those who were hurt, I apologize and endeavor to do better in the future. Mea Culpa. I’m sorry.

Teal Haired Ania Cartoon blushing and looking apologetic
I’m sorry

As such please note: CN for use of Insane as a pejorative.

Listen to the Podcast Here

Interview for Bi Any Means

MMJ 101: Barriers to Use

Among one of the concerns regarding medical marijuana are the potential barriers to the use of this medication. In places, medical marijuana is still not legal, but even in places where it is, like Canada, there are still challenges that present themselves. While my experience is limited to Canada, I find that a lot of the barriers that exist remain the same. If you have experiences you would like to share, please feel free to include them in the comments.

Knowledge – Patient’s

One of the first and biggest barriers to medical marijuana is a lack of information as to how to go about getting a prescription. It used to be that you had to fill out a large complicated set of forms to be submitted to Health Canada. The application would then be handled by some bureaucratic process at which point you would be approved or denied.

In March 2014 the rules changed. Now, instead of filling out a Health Canada form, you fill out a form directly with your choice of dispensary. The Health Canada website provides you with a list of licensed dispensaries, and most of them have their forms available online.

The forms include two parts: personal information, and doctor prescription.

The prescription form has to be filled out by a medical doctor, and includes dosage information as well as the doctor’s office information.

The forms are mailed to the dispensary, which confirms that the doctor who filled out the prescription is properly licensed, and you become a registered patient.

Knowledge – Doctor’s

While patients are uninformed, so too are doctors. When I was first looking for a prescription, I asked my GI for it. He said no. I was surprised since he actually seemed supportive of my occasional use.

Over the next few months, whenever marijuana came up with other doctors like those at the ER, they recommended that I get a prescription. I was torn, doctors seemed supportive of the idea, but yet I seemed unable to get a prescription. Finally, I decided to bring it up with my GI again and ask why he was unwilling to give me one.

It turned out that my doctor was under the impression that a condition had to be fatal in order to allow for the use of medical marijuana. Even though he thought that pot would be beneficial for me, he believed he wasn’t allowed to prescribe it for me.

Other doctors are unaware of the current available research. I had one ER doctor believe that marijuana was counter-indicated for Crohn’s even though Crohn’s is one of the few conditions that have had studies confirming the benefit of marijuana.

Patients are not the only people being fed misinformation about medical marijuana. Doctors are just as likely to have mistaken ideas about its use, its addictive properties, and so forth. The new rule changes make doctors the gatekeepers to prescriptions, but no efforts have been made to properly educate them. This leaves it up to patients to educate them or find a sympathetic doctor.

Even those patients who are more knowledgeable in the effects and use of marijuana may find it difficult to find a sympathetic doctor. It is counterintuitive to most patients to push their doctors for explanations. Since there is the fear of being labeled a drug seeker, patients might also worry about seeming over-eager about the acquisition of a prescription.

Continue reading “MMJ 101: Barriers to Use”

MMJ 101: Barriers to Use

Medical Marijuana 101

I used to be terrified of cannabis. When I was in high school, I was chosen to be our schools representative at the regional anti-drug advocacy seminar. I was terrified of drugs. I was convinced that if I ever tried even a single puff, that I would spiral into the depths of addiction and end up on the streets looking for another fix. This is what we were taught through the anti-drug commercials, the talks at school and so forth.

When I left the sheltered community I lived in for university, the reality seemed quite different than what I was taught. I saw responsible and intelligent individuals indulging from time to time without any negative consequence. The more I heard about marijuana from people how had used in the past, the more I came across studies, and the more I witnessed, I realized that what I had been taught was wrong. Marijuana wasn’t some scary devil’s weed.

Although intellectually I knew that what I had been taught was wrong, I still feared touching the stuff. It just wasn’t my thing. And that’s perfectly ok.

I remember the first time I tried it. I was 25 years old, and I had been flaring for weeks. Every trip to the bathroom ended with me in tears. I felt like I had a rusty knitting needle sticking through my colon. I hadn’t really eaten in several days, terrified of the pain it brought. My roommate at the time was a stoner. Strangely, knowing her made me a bit more afraid of marijuana rather than less. She had told me more than once that her cousin with Crohn’s used it to help her with the pain. By this point I was desperate but still worried. I was allergic to smoke! Would it really work? Was I just setting myself up for some tragic result?

So I did what I usually do when questions such as this come up, I went to the google. I browsed several scholarly sites, and what I found reassured me. A lot of studies out of the Netherlands showed a link between marijuana use and pain reduction in Crohn’s patients. There was another site that showed the arguments for and against. The argument against boiled down to “it probably works but we don’t know because we haven’t studied it enough”.

I decided to brave it.

To understand how I felt, you would have to have been through extreme pain that lasted a long time, only to suddenly have it disappear.  You would have to have been hungry and unable to eat, and suddenly being able to enjoy food again. It was like having a sudden vacation in the midst of all this pain.

It was several months before I tried it again.

It is hard to explain what it is like to experience pain every single day. Energy becomes a precious resource, like water in the desert, and like water it is rare and needs to be guarded carefully.

There is a lot of misinformation surrounding medical marijuana. On the one hand you have peddlers of misinformation making it out that marijuana is the very worst of drugs, creating rumours about how stoned people commit acts of violence. On the other hand you have the people elevating it to the status of panacea.

As a user of medical marijuana who has experienced both sides of the coin (the fear and the treatment), I thought it would help demystify it by answering the most common questions I see and explaining about what my use looks like.

Why do you take it?

Cannabis works very well on a variety of symptoms. It is known for its pain control abilities, however, it can also help with nausea and relaxation. Different strains can also help with other symptoms, including anxiety, depression, and even certain types of focus problems.  There a variety of different conditions that benefit from different effects.

In my case I use it to control the chronic pain and nausea associated with Crohn’s. It helps stimulate my appetite on the days when I am having a hard time eating. It helps my muscles relax which in turn reduces arthritis pain. I have had prescription painkillers and anti-emetics, but when my Crohn’s is flaring I have a hard time digesting pills. Oral medications don’t work for me. They either don’t work at all, or wear off long before I can take my next dose. A lot of pain killers also cause elevated nausea.

Marijuana on the other hand provides pain relief without involving my digestive system, without provoking nausea, and leaving me a lot more clearheaded than pain killers do.

Are you afraid of getting addicted?

A lot of stoners will immediately start talking at this point about how marijuana is not addictive. There are conflicting studies on the matter, however, what is known is that marijuana is safe. With the conflictive information, it can be difficult to know what’s what.

There are numerous studies that suggest that marijuana is not chemically addictive.  So why the confusion?

The confusion comes from the matter of tolerance. Once of the markers of addiction is building a tolerance to the medication and requiring a higher dose to achieve the same effect. Consistent [read daily] use of marijuana can lead to an increased tolerance over time, which can lead to greater use. This would suggest that it is addictive.

However, if you talk to chronic users, whether medical or otherwise, they will tell you that all it takes to reset the tolerance is to skip a day here and there. In fact you can rid your system of marijuana in just four days. Withdrawal symptoms are mostly not present.

So if it is not chemically addictive, then what else is there. There is some suggestion that like many other activities that lead to feeling good, sex, video games, Facebook, it can be psychologically addictive. This means that people can begin to seek the sensation.

When all is said and done marijuana is one of the least addictive painkillers available, and one with the fewest side effects.

But is the pain really that bad? Pain is natural! You don’t look in pain.

Pain may be natural, but that doesn’t make it good. Pain and inflammation have more long term side effects than marijuana. Pain and inflammation can cause memory loss and reduced cognitive function, it can cause permanent nervous system changes. It can cause depression, change brain chemistry, supress appetite and sleep. It is a serious condition that a lot of people underestimate.

Chronic pain is not like the pain you get from a paper cut, or even a broken leg. It drains your energy your motivation.

When you live with chronic pain, you learn how not to show it. Pain becomes our reality so we have to learn to live our lives around it. I’ve laughed and danced around while my insides felt they were tearing. It costs me something to pretend not to be in pain, but the alternative is to never be able to have fun or too often make other people uncomfortable.

Earlier this year I had my wisdom teeth removed. Before the operation I was hooked up to a machine that measured my heart rate, blood pressure, and oxygen saturation. I was talking happily with the nurses, and periodically, my heart rate would jump up for some time. He nurses kept trying to figure out what was going on, until finally one of them thought to ask me if I was having any pain and I admitted I was. They had been unable to tell if not for the heart monitor. If trained professionals cannot tell when I am in pain, what hope do you have?

Ok, so why doesn’t everyone do pot?

Pot is not a panacea. While it is very good for a variety of conditions, pot is also counter-indicated for others, and not everyone reacts the same way. For example some people have had great luck with pot for migraine, while others find that marijuana makes their migraines worse.

While some people find it useful to help control anxiety, others find that the paranoia exacerbates it.

Even in my own use, I have learned that it doesn’t work for all types of pain. It is great when dealing with the pain from my Crohn’s and arthritis, but I have found that it doesn’t work at all for pancreatitis and tooth related pain.

Some people have adverse reactions to marijuana.

How does it work?

There are two active ingredients in cannabis: THC and CBD. Both of these have medical applications and both are useful for pain.

THC is most often used for the treatment of pain, nausea, and aids in relaxation. It is also the ingredient that is associated with the psychoactive side effects some people experience. A high THC strain is recommended for chemotherapy patients and other pain and nausea conditions.

CBD has anti-psychotic properties that act as a sort of antidote to THCs psychoactive effects. High CBD strains are recommended for convulsive disorders including seizures, and can be better for anxiety.

What do you mean by strains?

There are a variety of different genetic lines that lead to slightly different products that in turn yield different effects.

There are three major species: Sativas, Indicas, and Hybrids.

When it comes to the specific science of these three strains, I am not an expert. Some ideas are common knowledge however. Sativas tend to be associated with a more energetic high. Indicas provide a more mellow, sleepy high, and is commonly associated with couch lock. Hybrids combine elements of both. There are also some discussions of a head high versus a body high.

I know that I prefer sativas for days when I need to get work done at home, and indicas when I need to sleep. However, mostly I do a mix of both types, including hybrids to get the desired effects.

Among the species there are different product yields (strains) as well. The best analogy I can think of would be roses. The species might be the difference between creeping vines of roses versus bushes, while the strains would be the different colours that can be produced.

Strains often have interesting names. For example the strains that have been offered by my dispensary include Blue Dream, Afghani Bullrider, White Widow, Pink Kush, Girl Scout Cookies, etc. Each of these produces a slightly different effect and works on different symptoms.

How do I know which strains will work for me?

A little bit of experimentation is needed to know what works best for you, however, there are resources out there that can give you a guide to what the different properties of different strains are. My favourite resource is called Leafly. It lists the strain information, the effects, the medical information, as well the negative side effects like dry mouth, headaches, etc.

The site also includes blog information which includes more 101 information.

Some people, myself among them, find it useful to mix strains to achieve the desired effect.

Medical Marijuana 101

What it Really Means To Be Poor and Disabled

The other day, I spent an hour and a half on the phone with the Ontario version of welfare known as Ontario Works. Of that, one hour was just being on hold. It took less than 30 minutes for them to decide that I don’t qualify. 30 minutes to decide that even though the money my non-citizen boyfriend makes is not enough to cover all of our bills, it is too much for us to qualify for financial assistance.  Our bills are not outrageous, but the reality these days is that life is expensive. Apartments, gas, communication, etc. the price for all of these is going steadily up while the income one can reasonably expect goes down.

Half an hour is better, I suppose, than the 6 months that ODSP took to respond. According to them, having extreme pain, not being able to walk long distances or stand for long periods of time, regularly bleeding internally, not being able to keep food down or stay out of the bathroom for more than an hour, all of this while also being immunosuppressed and so being frequently laid low with all the colds, viruses, bacteria, and more making their way through our population and air, doesn’t count as a disability. Crohn’s doesn’t count as a “A substantial physical or mental impairment that is continuous or recurrent”. Of course not! Why would something where your worst day means you in the hospital hooked up to IV nutrients, steroids, and pain killers, and your worst day happening every few months or weeks, count as a disability? It is not like being in pain, or in the hospital, or not having the energy to move because you haven’t digested food in days, impacts your ability to work. Of course NOT!

There have been lots of really good articles addressing how people look at poverty, at the unfair assumptions surrounding people who are poor, and about how insidious poverty is. A lot of these articles come from people who have gone through poverty themselves and are worth taking a look at.

One thing that people don’t seem to really look at however, is how much the systems of poverty exist to keep the underprivileged poor and desperate. How the system is particularly set up to make sure that if you are sick or have a disability that you better get used to desperation and fear. You better get used to doing without. That the system is designed to make sure that you feel useless, worthless, and like a loser. About how if you are poor, society tells you every day that you are not worth keeping alive, because clearly it must be your fault that you are poor so you deserve the consequences that come with it, even if they mean death.
For me it all started really with my disabilities. Before that I was a typical broke student. Not rich, but not really poor. My bills were paid by my parents who also gave me a weekly allowance for groceries.
Budgeting meant deciding how much of that weekly allowance went for treats and how much for essentials. It meant making sure that my monthly bills didn’t go over a certain agreed upon amount per month. It meant looking for a job to supplement that income and help take some of the burden off of my parents. But ultimately, it meant that if I ever got in trouble, if I ever had an unexpected expense or that if something bad happened, I had a safety net to fall back on. I had my parents who would make sure I wouldn’t starve, or go homeless. Who, while letting me learn from my mistakes like maxing out my credit card (of course I have to pay that off myself), would also not let me become desperate.

When my health troubles started, so did more serious concerns about money. Early on the medication I was put on was a biologic: a new line of meds that modulate the immune system in order to help prevent the immune response that is causing you problems in the first place. Because biologics are new and in many cases, still being studied, they tend to be obscenely expensive.  At first, it was a hardship, but manageable. My parents were able to cover the expense, though my guilt over being reliant on them for support became even more intense. I became determined to work towards self-sufficiency.

For months, my parents and I tried to get on Trillium: a provincial prescription insurance that takes applicant’s financial information into consideration.  While we were approved, they decided to take my parent’s income into consideration and the deductible was so high as to make the coverage essentially non-existent.   This is a common occurrence. Despite the fact that my parents lived more than 8 hours away, it made no difference into their considerations.

When my Crohn’s kicked in, I was switched from biologic to biologic, finally ending up on Remicade. Had it stayed at that, the situation my family and I had going might have been able to continue. This was not the case however, as my Crohn’s refused to go into remission. I was getting better, but only in that I was no longer ending up in the hospital every two weeks. Instead, I was still sick, but was able to limit hospital admissions to twice a year. I was able to simply survive my flare until the next dose, and experience a brief window of seeming normality immediately after the infusion. My doctor decided that something more extreme had to be done to try and push my system into remission. I would have to go on a double dose of Remicade.

My first double dose however would be given before I could qualify for Trillium. With that in mind, I did something I had been hoping to avoid for a long period of time: I took out a student loan. More accurately, I took out a student line of credit. I used the money from the line of credit to pay for my next dose. I also used it to help pay expenses until I could find a job that would be able to cover everything: rent, groceries, everything. I was officially on my own. Months before this happened, my house had burned down and I had lost everything. I had little clothing, and not very much furniture. The insurance money had gone towards paying my next year’s tuition, as well putting down a down payment on a new apartment, and supplying me with a very limited wardrobe to replace what was lost.

I found a job that would help cover things. I was prepared to work hard. I wanted to keep this job until I was finished with school and could get my long term job/career. I knew it would be difficult, but I was prepared to apply myself and be the perfect employee. I saw myself on the path to middle class normalcy: a little difficulty in the beginning followed by relative comfort and security in a white collar/professional job. I didn’t want to be a millionaire or a CEO. I wanted to someday have a house and a car, to have a family, to have a job that I like, that makes me feel as though I am making a difference. I wanted to be able to occasionally go on a vacation, and to have fun with making my interesting recipes. I wanted to save for retirement. I wanted to occasionally be able to splurge on something knowing that while it might mean saving for a few months, it wouldn’t put my life, home, or security at risk. I still want/dream of all those things.

What I didn’t know was that that new job would send me on a path that would eventually spiral into disaster. It started out great. It was work I enjoyed: doing social media marketing, writing, with some occasional clerical work. There was variety, with me occasionally being asked to come up with a meal or event idea for my boss, doing some personal assistant work like filing papers with the court, etc. etc. A few months into my job however, trouble started brewing. My boss was considering a company move, and the hustle and bustle included a loss of her assistant dealing with the paperwork side of the business.  She looked for someone new, but eventually, the responsibilities fell to me. I didn’t mind since more work meant more hours and in turn more pay. Soon however, it was clear that the amount of work expected was beyond what was feasible. I was doing the work of a marketing assistant, a clerical assistant, and a personal assistant. Soon many days would end up with me working for ten to twelve hours straight. Frequently I would work through lunch, or miss it all together. I would come home exhausted, too tired to make dinner or do anything other than go straight to sleep. While I was doing the work of three people, my boss didn’t believe the work-load to equal any more than that of half a person. She became dissatisfied with my performance, convinced that I was too slow, or just too lazy. The stress of trying to maintain the long hours, the quality of performance, all the while increasing the speed at which I completed everything began to make itself felt.

I bought a car to help mitigate the fact that the bus commute was more than an hour long, and to take away the stress of not knowing whether I would have access to the company car at any given day. With the money I was making at the time, it was within our means and would also give me more opportunities to be even more productive.

I was constantly anxious. I would receive multiple texts a day, from the office, from my boss, from clients. At times I would be messaged late at night to perform some emergency task. My inbox was constantly flooded. I was falling behind in my work, which in turn made my employer punish me for unproductivity.  I was becoming sick more frequently, finding blood in my stool at an alarming rate. I was admitted for some time with pancreatitis. I began to need my medication more and more. I was constantly exhausted and felt wrung out and on the verge of meltdown. I started gaining weight due the stress and the unhealthy eating habits that became the norm of my life.

After buying the car, the unreasonable expectations, the anxiety, all came to a head when my boss gave me reason to believe that I would not receive my next paycheck. I spiralled into a state of anxiety so bad that I had to call in sick from work. I felt as though I couldn’t breathe. I looked back over what had been happening in the last few months and realized that I was in an abusive relationship with my boss. I was wound so tight with anxiety over that entire time that I became convinced that I would snap. I had a panic attack every time I heard the tone on my phone I had set as hers. I would jump whenever I heard that sound coming from someone else’s phone wondering what I had done wrong now.

I made a decision that despite all the hardships that would come from it, I still maintain was the right one. I quit. I knew that the decision was one I had to take.

I began to look for a new job right away. I went to various interviews. I was hoping that one of the other people at the company would hire me. I knew that many of the others there thought I was doing a good job. I went to interviews and finally I was offered a job. It was a bit different from what I had done in the past. This time I would be working as an office assistant in a trades industry. Things began spiraling further down almost immediately. The office was frequently dirty, with dust lining every surface. My bosses were constantly at each other’s throats. It was not uncommon for someone to slam doors, yell, or burst into tears. The whole office environment fed on drama, with everyone talking about everyone. It was a minefield of emotional stress.

My Crohn’s rebelled. Over the next several months I existed in constant pain outside of what I had learned to tolerate. I was frequently ill. Mornings would involve me struggling to find the energy to get up and get to work. I had to call in sick frequently since the dirty environment did not agree with my immunosuppressed status.  My promised raise fell through when my bosses became upset with my frequent illness.

I started going to the washroom more frequently as my flare up worsened. This was remarked upon by my employers, who wondered whether such frequent trips were necessary. Though I was working significantly fewer hours than I had previously, my exhaustion worsened. After the previous work environment had set off my anxiety, this new emotionally volatile environment became too much to bear. After months of hoping everything would settle down, after weeks of looking for a new job on the side, in the hopes that I could find a new environment, sharp stabbing pains in my stomach landed me in the hospital.

The doctor in the emergency room remarked that I was flaring. I needed to take time off. She wrote me a doctor’s note telling me to stay away from work for the next week. My regular GI followed up with his own concerns about the state of my health in the last few months. It was becoming obvious that I could not keep this up much longer without serious long term consequences to my health. I needed to stop.
I applied for sickness benefits and left my work. I needed to re-stabilize in order to have any hope of getting better and someday getting back to that goal of normalcy.

Applying for sickness benefits is a difficult process on its own. It takes weeks to get approval and in the meantime you exist in a state of moneyless limbo. It is a terrifying state. You are not working and have no money coming in, but you have to wait weeks to find out if you are even approved. You worry that at the end of that time, they will decide not to cover you and that you will be without the funds you need to pay rent, your bills, or buy groceries. You have no way of knowing which way the decision will go. Many people who deserve to be on sick leave don’t get it, while others are approved. How can you tell which you will be until it is too late?

I spend Christmas in this state of limbo, relying on the kindness of friends who donated to my blog. My parents as well sent me some money for Christmas, which helped make sure I was able to eat.
Finally, I got my approval. For the next few months I was taken care of as I worked on getting back to form. Still, in the back of my mind was another fear. What would I do once the coverage period ran out? How long would it take me to find a new job, and would I even be able to work again? I applied at this time for ODSP: Ontario Disability Support Payments. With disability, I wouldn’t have to worry if I continued to be unable to work.

The frequent pain and illness were beginning to take their toll.

All around me people were warning me that getting approved for disability is close to impossible. I did my best to look for sources of income that would work with my disabilities. I found a job briefly, but soon my anxiety and my disability got in the way and I was fired. Finally this past month, I made a try for welfare.  My application for disability was denied in the first rounds. I will be fighting appeals to try and get myself approved as being genuinely disabled. In the meantime however, I struggle with finding a way to survive.
In the meantime, the stress works its negative effects on my health, prolonging my incapacity.

While struggling to find solution to our monetary woes, there is also a fear in the prospect of making too much money. At what point will trillium decide that I can afford to pay $9000 every six weeks? If I manage to get disability and then go back to work, at what point will they decide that I make enough that they no longer have to help provide me with insurance for things like eye care and dental. Health insurance in general is out of the question thanks to my “pre-existing” conditions.

But still that point is far away.

Instead, I have to wait on all that until support runs out, to start working on pulling myself out of this hole, in essence prolonging the length of time I spend in financial insecurity.

I am not the only one in this situation. This is the harsh reality of living with a disability. Pain, anxiety, disability guilt, illness, and exhaustion all stand as barriers to being able to work.

Even if you are able to work, many employers are not interested in taking the risk of hiring you, lest they be on the hook for covering any long term hospital stays or disabilities. In truth it is not completely unreasonable when you consider that, at least in my case, a normal year could require a minimum of 40 sick days. Others find excuses to fire you so that they don’t have to deal with their responsibilities towards you.

If you belong to other identifiable minorities, the difficulties in finding suitable work can be even more intense. There is a societal attitude that pains people struggling with disabilities as being incompetent. If you are a woman, such a disability can further disadvantage you in the eyes of employers. If you are a woman raising a child, then most employers are really unwilling to take the risk. If you are a person of colour, you have to struggle against stereotypes and racially motivated assumptions about the source of your disability.

Many of us live on the brink, juggling our desperate financial situations with a desperate search for ways to treat our conditions. We go to doctor’s appointments, take harsh medications, spend endless hours in waiting rooms, and getting tests done. Sometimes we end up in the hospital, hooked up to drugs and IVs that only take the edge off of our sickness or pain, to maintain us until they can try the next potential treatment or the next referral.

The internet has provided a means of requesting support from our friends and/or followers, whether for occasional extraneous expenses like moving, or for more regular help in paying your bills while you wait for more permanent means of supporting yourself. Even aid like welfare does not actually provide valid means of support. The government has expectations that you be able to find shelter, buy food, and manage all of your other expenses for less than $600 a month, in a city where most bachelor apartments start at that amount.
When we try to make use of the funding support that the internet allows us we are either shamed by friends and family who insist that we should be too embarrassed to ask for the basic means to be able to survive, or we are accused of being scam artists. I have seen this repeated over and over again. In the past on my blog I have been accused of running a scam when sharing similar stories of desperation from other struggling people with chronic illnesses and impairments. When recently Angie the Anti Theist shared her own story of desperation which motivated others to start a fundraiser on her behalf, commenters have used her frequent requests for money as proof of some sort of incompetence or abuse of people’s generosity. These types of complaints only add to the weight of anxiety and burden already caused by our situation, while ignoring the circumstances that make these frequent requests necessary.

These same people who complain about the frequency of our need to share our stories, or our attempts to discuss how the systems is unfairly set against us. We are accused of just whining or not thinking positive enough. We are told that all we need is a healthy diet, or exercise, which ignores those of us who either already do or are unable to due to poverty or pain. Pointing that out of course just means that we are useless pawns of pharmaceutical companies. We are told that talking about our stories just decreases our likelihood of getting a job.

We are called lazy, we are called incompetent, we are called moochers and drug addicts, and I for one am sick of it.

What it Really Means To Be Poor and Disabled