Unbelievable Pain: 10 Years of Being Told I was Overreacting to Chronic Pain

I’ve been wearing glasses for the vast majority of my life. I think I got my first pair when I was one. While I can’t say that my history with glasses has been completely uneventful (I am autistic after all), most of my issues stemmed from dealing with getting a new pair adjusted comfortably (AKA my mother’s worst nightmare), then any issues were either routine maintenance—getting a nose pad realigned after one got bent—or because the glasses were faulty—I do not miss that pair of glasses from when I was ten that was constantly losing screws and had the lens fall out about once a week. So, when I was twenty-one and my glasses felt tight behind my ears, I assumed that I either needed to get them adjusted or buy a bigger pair.

The thing is neither worked. When adjustment failed to make my glasses comfortable, I bought a new pair but that didn’t work either. So, I exchanged them for another pair. I was still in pain and the pain was spreading and getting worse. What had started out as pain where the arms touched my head now also hurt pretty much everywhere glasses touched my face. Particularly on my nose. Just taking the glasses off wasn’t enough to stop the pain. It would throb for days.

All of this was going on for months and everywhere I turned people dismissed my pain as just my being autistic and not being able to deal with a little discomfort. Regardless of the fact that I had been successfully wearing glasses without major incident for two decades. I couldn’t wear contacts so I started complaining to doctors.

At first, I was largely dismissed. I was told I was overreacting or that it was all in my head, but I wouldn’t shut up about it. Even though I always described the pain as feeling like it was on the surface of my skin, the doctor decided that it might be an inner ear issue or something with my sinuses, I was referred to an Ear Nose & Throat specialist who found nothing even after a CT scan.

I was still in pain though and it was getting worse. By this time, I could barely stand to wear glasses for any length of time and when I did my right ear would wiggle involuntarily every time I spoke, smiled or ate something causing my glasses to jiggle up and down on my face causing more pain from the friction.

I stopped wearing glasses entirely (my eyesight wasn’t great but I could manage) and the stress from the pain and not being able to find a solution resulted in long-term insomnia which in turn led to migraines.

The doctors decided that it had been migraines all along despite this pain being separate from what I had already described. They decided to check if I had hydrocephalus which involves a spinal tap and at least two MRIs. Spinal taps suck on their own but they also cause hideous migraines. On the day of my second MRI, I was in so much pain that I couldn’t bear to stay vertical. I also couldn’t get to the hospital for my MRI because it was Winter in Saskatchewan and there was so much snow that a bus had gotten stuck at one end of our road and the tow truck sent to get it out was stuck at the other. I eventually got the MRI and I don’t have hydrocephalus. I was diagnosed with an unspecified migraine disorder and given Elavil.

Elavil pretty effectively dealt with my insomnia which dealt with the migraines. It didn’t touch the pain on my face or on my temples. I still couldn’t wear glasses.

An optician recommended that I try a pair of ultralight titanium frames. They cost about $900. I was desperate and convinced my mother to buy them for me. They weighed nothing. They still hurt my face. After what feels like dozens of adjustments (you think I’m exaggerating but I’m not, that optician is a saint) I finally got them to a place where I could tolerate them for a few hours at a time. I basically only wore them when I left the house. I took them off the second I got home.

At that point, I hadn’t worn glasses in about three years.

Whenever my prescription changed, I would just have the lenses replaced on that pair with a promise from the optician that nothing about the frame would be moved during the process of changing the lenses. Alas, eventually opticians refused to change the lenses claiming that the frames were so old that they didn’t have the structural integrity to undergo another set of lenses. I could no longer forego glasses, so I just had to try and make do.

This generally meant smothering my glasses in moleskin, a first-aid product that is soft and fuzzy on one side and sticky on the other. I put that stuff everywhere, on the nose pads, on the arms. It wasn’t pretty but it was the only thing that made glasses tolerable.

I was still trying to figure out why I was in so much pain but doctors had more or less stopped paying attention to me when I complained about it. My glasses still hurt and I still wasn’t wearing them as much as I should but everyone was telling me that my pain was irrational. They’d been telling me that for nearly a decade. I started to believe it. I know people reading this right now think I’m full of shit. I started to believe that I must not be buying the “right” glasses. It turned into anxiety that would see me panic purchase glasses that I couldn’t afford because maybe just maybe these ones would be different. No matter the style, no matter how different from other glasses that I’d tried, they never worked. I was still in pain.

Fast forward to late last year. I got a medical marijuana prescription for pain associated with my cerebral palsy. Suddenly the pain was gone. Not 100%, I knew it was there but it was mostly an irritation. I can ignore an irritation. There are still glasses that I can’t seem to wear. Metal frames with nose pads will irritate my nose too much for full day wear but I can stand them for short periods of time. I have better luck with plastic frames.

Suddenly, because I had figured out how to treat the pain, my doctor started taking it more seriously. I got a referral to a neurologist and three weeks ago tomorrow I was finally diagnosed with Atypical Facial Pain (sometimes referred to as Persistent Idiopathic Facial Pain).

The weird thing is that while I feel vindicated and deep down knew my pain was real. The doubt and gaslighting I experienced in over a decade of pain has had an impact. One of the unfortunate issues with the way Canada handles legal medical marijuana is that patients don’t always have consistent access to certain products. My supplier was out of CBD for months (yes for nonCanadians who might be used to CBD being considered legally separate from marijuana. In Canada, CBD is considered weed and you need a special kind of prescription to get it) and the came back. Yet some part of my brain had somehow convinced itself that maybe I had been making it all up. I’d been pain-free for weeks after all. So, I ended up experiencing a lot of denial when the pain came back even though I didn’t have access to the medication I was using to control it.

This is the price of people not believing your pain. You can’t even look at it objectively anymore. I will likely need to manage this pain for the rest of my life and I’ll probably have periods where I’m still convinced it’s all in my head for at least a long time to come despite the vast difference in quality of life that pain treatment gives me and the fact that I’ll also very likely have periodic reminders of just how real my pain is because I only have intermittent access to medication. CBD is out of stock at my supplier again, so I’m probably in for a reminder soon.

 

 

How to support my work and a not so subtle request that you help me buy drugs. Medical Marijuana isn’t covered by most health insurance providers in Canada and the few that do only do it on a case by case basis so I’m paying out of pocket for necessary pain intervention and this has taken a toll on my already precarious financial situation.

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Problems with the Disability Tax Credit Run Deeper than it Being Non-Refundable

On Friday CTV News ran a story titled  Six in 10 Adults with Disabilities can’t Benefit from Disability Tax Credit. The main focus of the piece is on the fact that the credit is non-refundable. This means that in order to benefit from it the recipient actually has to make enough money to pay taxes. The problem being that most people who qualify for the credit don’t make enough money. The recommendation they come up with is to make the credit refundable. This way everyone who qualifies gets at least part of the credit regardless of their income.

I would absolutely love for the Disability Tax Credit (DTC) to be refundable as I am part of the 60% who qualify who don’t make enough money to benefit (shameless plug. You can buy me a “coffee” by making a donation here or by clicking the “buy me a coffee” button in the right sidebar). The thing is that problems with the DTC run a lot deeper than whether people who qualify can actually benefit.

Let’s start with the big one. The title referring to 6 out of 10 adults with disabilities is misleading. It’s really 6 out of 10 adults who qualify. This is a huge distinction because the DTC is notoriously difficult to qualify for. The application process seems designed to arbitrarily disqualify people. It is so confusing and the standard so arbitrary that doctors don’t even want to fill it out. Not because they don’t think you qualify but because they worry that if they make an error that you will be refused.

In theory the DTC is designed to “provide for greater tax equity by allowing some relief for disability costs, since these are unavoidable additional expenses that other taxpayers don’t have to face.” (quote from the government of Canada website).

You would think based on that stated intent that qualifying standards would be based on things like:

Having a disability

Having expenses related to that disability

The first of those is true, the second is not and just having a disability regardless of the addition financial burdens it brings is irrelevant. Instead prospective applicants have to wade into an arbitrary level of disability that has very little to do with defining a person’s actual experience of disability. A person’s functioning is broken down into several categories in which you must be markedly restricted in at least one or significantly restricted in at least two (see the application form here. It’s a PDF. here’s a text version).

Markedly and significantly are quite subjective terms. Markedly is at least partially defined. Let’s look at the functioning category for feeding,

Your patient is considered markedly restricted in feeding if, even with appropriate therapy, medication, and devices:
• he or she is unable or takes an inordinate amount of time to feed himself or herself;
and
• this is the case all or substantially all of the time (at least 90% of the time).

Oh hey a new arbitrary and subjective word inordinate. This is confusing enough but the part that really frustrates me is the restrictions on what qualified as feeding “Feeding oneself does not include identifying, finding, shopping for, or otherwise obtaining food”. So shopping for food doesn’t count?

So the fact that I either have to take the bus to the grocery store–which seriously limits how much food I can buy at one time based on how much my physically disabled body can carry (people who use accessible transit may be even further limited as many such services limit how many bags a passenger can have) thus necessitating more trips to the store–or pay to have my groceries delivered–which is a cost that the DTC would offset–do not get counted in the “inordinate amount of time” it takes me to feed myself. Even though I’m either out money or additional hours just to have access to food much less to prepare it.

This leads to my second major issue with the DTC. It appears to assume that applicants aren’t independent and that someone (like a parent) will be collecting it. I suspect that this is why the credit is non-refundable. The government assumes that the disabled person is in someone else’s custodial care. Someone who is not disabled and who is making enough money to qualify for tax credits. Someone who will be able to do all the necessary grocery shopping in one go.

Why do I suspect this? Just look at the application form on page 1. The first two sections are “Information about the person with the disability” and “information about the person claiming the disability amount”. There is no box to tick which indicates that they are the same person. Rather the form doubles down with “the person with the disability is:  My spouse or common law partner______ or my Dependent(please specify)______”

I mean, I guess I’m dependent on myself but I don’t think that’s what the form is getting at. I guess if we’re being literal then I also meet the two follow up questions. Why yes, I do live with myself and yes, I do depend on myself for food, shelter, and clothing.

Correct me if I’m wrong but most forms where it might filled out by a qualified applicant or a guardian (think adult passports which are applicable to anyone over 16) usually assume the person is applying for themself. They just tend to have an extra section or box that says something along the lines of “if the applicant is a minor, the parent or guardian must sign here”. It’s clearly separate. The DTC form however, doesn’t even really acknowledge that you might apply yourself. Even though it is completely legal to do so.

My third major issue with the DTC is that it requires you to requalify every five years. So you have to go the pain of convincing a doctor to fill out that ridiculous arbitrary form again.

Now I understand that some disabilities are temporary and that some people don’t qualify on a permanent basis. The way to get around that? add a box for the doctor to indicate if a condition is permanent and have them set out a reasonable timeline to requalify. If the condition is permanent drop the bureaucracy of requalifying and don’t bring it up again until you can show us peer reviewed medical evidence that something can be cured. Otherwise it just appears that the government has decided to take an official stance on believing in miracles. Which is awkward.

So as much as I would love for the DTC to be refundable. In reality for it to work as the government itself claims to intend. There needs to be a complete overhaul of the system. An overhaul that is unlikely because it would acknowledge that far more people should be qualifying and also erase some of the roadblocks to maintaining access to the DTC. All of this would cost far more than the estimate cited in the CTV piece.

The status quo keeps costs down. The government doesn’t want it questioned to deeply.

Thoughts on Assisted Suicide as Canada Moves Toward Concrete Legislation

As a disabled person, I have concerns about physician assisted suicide (PAS). However, I live in a country that is swiftly moving toward concrete legislation that will make it legal and accessible to applicants. As a result I think the time for debating whether PAS should be legal is a bit unproductive. I don’t say that to silence discussion. I fully expect and endorse that the discussion around the morals and ethics of PAS will and should continue.

However, from an activist perspective, it is time to accept that this legislation is quickly approaching and it will be far more productive to highlight out concerns and make suggestions that will hopefully make a society which allows PAS to be safer for disabled people.

In terms of guiding legislation I would like to see the following requirements for applicants for PAS.

  1. The application must be made by the person seeking assisted suicide. There should be no allowance for surrogate decision makers applying on behalf of people who can’t themselves apply.
  2. There should be no advance directives for PAS in cases of dementia. A person must be capable of agreeing or changing their mind at the time the lethal action is taken (this is going to make many people very angry but I think it’s necessary)
  3. The term suffering must not be applicable as a general descriptor to disability in any part of the legislation. Only an individual can label their own experience. There should be no legislative bias.
  4. PAS must be patient initiated. Physicians must not be allowed to list it as a possible treatment option. They should only be able to elaborate on it as an option if a patient specifically asks about it.
  5. There needs to be criminal legislation specifically targeting so-called mercy killings, so that in a world where PAS exists people do not become indifferent to the murders of disabled people by family members and care givers.
  6. There must be policies in place to identify if someone has been coerced into seeking PAS. If coercion is found, there must be services available to make that person safe (such as if the individual’s care giver is the coercive force, making alternate care arrangements)
  7. Make very clear guidelines about who can qualify for PAS. Avoid using really subjective terms like suffering unless they are accompanied by a rigid definition and not open for interpretation.

In my experience, people are woefully ignorant of what rights people had prior to Carter v. Canada (the Supreme Court ruling that legalized Physician Assisted Suicide). I can’t tell you how many people I have encountered who didn’t even know that you could refuse treatment (I’m not suggesting that this is a preferable option to PAS, just pointing out the lack of understanding), or for that matter that Advanced Directives like Do Not Resuscitate orders (DNRs) existed. So many people actually think that the Supreme Court ruling that occurred just last year opened the door for all of that. There is another shockingly large contingent of people who seem blissfully unaware that Carter v. Canada even happened.

I say blissfully unaware because they will often be found saying things like “In Canada we believe in maintaining life and we believe that until the last breath there is hope”. Seriously people, Canadians have had the right to DNRs for quite some time now and BTW Carter v. Canada is a thing that happened. I guess some people really do just use the internet to look at porn and cat videos. I can’t explain this level of cluelessness otherwise.

In many ways I feel that this ignorance of the nuance of end of life care and the options available and how long certain options have been available is scarier than the legality of PAS itself. It is ignorance that allows disability to be synonymous with suffering. It is ignorance of the current legal system that has allowed disabled people to end up with DNRs that they did not consent to. This ignorance is what allows people to say with a straight face that there is no concern of a slippery slope and that disabled people do not need to worry about being targeted by family, care givers and medical personnel for PAS.

The only way to truly tackle the risks that legal PAS poses to disabled people is to acknowledge that those risks exist.

We live in a world where disabled people are devalued by society. Some medical professionals have advocated that disabled infants be actively euthanized. Academics (like Peter Singer) have echoed that argument and have gone further to advocate for healthcare rationing as a cost saving measure. They argue that life outcomes (which they and not the patient determines) should be considered when deciding who gets life saving treatment.

It is really not that hard to imagine a family member nudging a patient towards PAS whether it be to avoid caring for the patient or out of a desire to benefit from an inheritance. It is equally easy to imagine a stressed and overworked medical staff of dropping hints to a patient whose care is both expensive and time consuming. Considering that society has already done a great job of framing disabled people as burden, that people would not be susceptible to such hints.

The biggest danger of the slippery slope is having those in power assume that their good intentions are enough to negate the risk of it happening. Acknowledging the risks and taking steps to stop them is the best hope of actually avoiding them. Good intentions are not enough.

 

How Secret Limitations on Grants for Disabled Students Hurt Us

Being a student with disabilities can be a complicated and expensive endeavor. While university is a financial strain for most students, disabled students often have additional costs associated with either services or equipment that we require to succeed academically. The government does recognize this additional financial burden and has grants in place to offset them.

The problem arises from the fact that the policies and restrictions for these grants are shrouded in mystery and if you can identify them, don’t necessarily mesh with reality.

On the surface the Canadian grant for Special Services and Equipment for Students with Permanent Disabilities seems amazing. It is advertised as offering qualifying students with funding up to $8000.00/academic year for services like tutoring or equipment like computers and adaptive software.

I have benefited from this grant in the past and hoped to access it again as I begin my PhD. Much of what I had received previously is either functionally obsolete after two operating system upgrades makes them no longer compatible with modern computers or just no longer functioning at all. As a result I applied for an updated version of Kurzweil 3000 (mine no longer works properly). If you are unfamiliar with Kurzweil it retails for over $2000.00 CND. It is also invaluable in that it enables me to get through my extensive list of required course readings.

The problem, the grant policies don’t allow for full upgrades of Kurzweil (purchasing an updated copy), only software upgrades (something that isn’t even available). On paper it looks like they understand that software evolves and that students need access to that update except they will only pay for it in a form that doesn’t exist. Effectively making their upgrade policy useless.

The biggest problem here isn’t that the policies are bad. Bad policies can be combated with evidence of their uselessness but that, the policies aren’t readily available to grant applicants. All you know when you apply is that you could be eligible for up to $8000.00/year. All the fine print surrounding cost restrictions and what they will replace is hidden and only available to the people deciding on whether or not you are approved.

I only found out about the restrictions after, I was only approved for a fraction of the funding I had applied for. I call my local student loan office and was met with a wall of statements like “well it is not our policy…” or “we have funding limits on…”

None of this information is available to applicants, you just end up with wrenching disappointment when you are not approved for things you were counting on.

On the National Student Loan Service Centre website, the grant is described like this

If you require exceptional education-related services or equipment, you may be eligible to receive the Canada Student Grant for Services and Equipment for Students with Permanent Disabilities. This grant offers:

  • up to $8,000 per academic year (August 1 to July 31) for each year of studies after high school (including undergraduate and graduate levels), provided you continue to meet the eligibility criteria.

The assistance provided under this grant is determined apart from your assessed need.

Eligibility

You are eligible if you:

  • apply and qualify for student financial assistance (have at least a $1 of assessed need)
  • are in a full-time or part-time program at a designated post-secondary institution
  • meet the criteria for students with permanent disabilities
  • include one of the following with your loan application as proof of your permanent disability: a medical certificate, a psycho-educational assessment, or documents that prove you’ve received federal or provincial permanent disability assistance
  • provide written confirmation that you are in need of exceptional education-related services or equipment from a person qualified to determine such need
  • show, in writing, the exact cost of the equipment and services.

The website for my provincial loans website is even more optimistic. It says that if your needs exceed the $8000.00 limit that you may be eligible for an additional $2000.00 from the province. They then link to the various forms that must be filled out. There is no mention of specific policies or restrictions (even though it’s the government you know they must exist).

You only learn about a policy if you ask for something that goes against it. You’ve already waded into the deep end of bureaucracy through the application process. You got the proof of permanent of disability, the statement of need, and the exact cost of what you need (which you need two quotes for each item, yeah they didn’t mention that on the website either). Now you are met with even more bureaucracy as you try to figure out why you weren’t approved for the full amount. The fact that classes start next week and these things were needed already. You are now faced with the reality that you may not get them at all.

It is hard to fight a system that knows all the rules and only informs you of them piecemeal when you break one.

It isn’t entirely surprising that the Canadian government won’t replace broken or obsolete technology. They are already skeptical  that disability itself can be permanent. I have in my dealings with them had to reprove my permanent disabilities countless times. The government seems to think that people miraculously recover. Forcing disabled people to waste time doing the same thing over and over.

This is best exemplified in this rant by Rick Mercer on benefits for disabled veterans.

It should be noted that in the case of veterans, the Canadian government now believes that miracles only occur every three years and have extended the length between required reproof by veterans to that time frame.

Under this system of miracles it is not difficult to understand that the government does not understand that computers break and that software becomes old and obsolete (or does not upgrade the way they want it to) necessitating repurchase.

Putting those kinds of limitations on disabled students effectively limits or can limit how much education that student can get. If the technology they received during their undergraduate degree is no longer suitable when they reach graduate school, it may affect their ability to continue in school.

Yet available information on this grant only hints at restrictions with phrases like “eligible students may qualify” and focusing on the high amount of the grant and making it seem that the help will continue by saying the money is available each year, giving the impression that you can apply for replacements.

Making the policies available or even summarizing the most common things that come up would go a long way in helping applicants tailor their applications for maximum success.

Keeping them secret makes it seem that the government doesn’t want applications to succeed or make the appeals process to onerous for applicants.

Completely erasing the fine print hurts disabled students while allowing the government to appear to be offering more aid than is actually available.