Tess Widdifield  •  She/Her
Developer, Strategist, Project Manager

All Health, No Care.

My experience with a chronic illness

I have always loved reading stories from others. I appreciate knowing that some of my experiences are shared, and find refuge in their stories. Throughout this piece of writing I have included quotes that resonate with me from various books I love, as well as a reading list at the end.

All of this started as a way for me to process what I've been going through, and quickly became something I knew I needed to share. If my story resonates with you, please reach out.


We are taught that medicine is the art of solving our body’s mysteries. and we expect medicine as a science, to uphold the principles or evidence and impartiality. We want our doctors to listen to us and care for us as people. But we also need their assessments of our pain and fever, aches, and exhaustion, to be free of any prejudice of who we are.”

- Unwell Women: Misdiagnosis and myth in a man-made world by Elinor Cleghorn

I thought a lot about whether or not I wanted to share this story publicly, especially with those in my wider professional and personal circles. I tend to be a pretty private person, usually clocking one social media post a year. But this past February, when I learned that the autoimmune diagnosis I was given when I was 17 was most likely incorrect, I was filled with an overwhelming desire to scream about my experience from the rooftops.

I know that there are parts of my experience that are very specific, but I also know that there are parts that are not. One in five women say that they have felt that a healthcare provider has ignored or dismissed their symptoms. Throughout history, women have been underrepresented in clinical trials, black women in particular have been absent.  Doctors have historically ignored and dismissed women’s pain as non-existent or hysterical. Women are less likely to be referred for additional imaging when in the process of being diagnosed, and pain and fatigue are some of the most medically unexplained symptoms in healthcare - it is no coincidence that chronic fatigue and fibromyalgia disproportionally affect women.

The Chief Public Health Officer’s Report on the State of Public Health in Canada released in 2019, identifies stigma as a key driver of health inequities in this country. The report looked at the multiple ways that stigma shows up in our healthcare system, including racism experienced by First Nations, Inuit, and Métis peoples, racism experienced by African, Caribbean, and Black Canadians, sexual and gender identity stigma as experienced by LGBTQ2+ people, mental illness stigma, HIV stigma, substance use stigma, and obesity stigma. The report identified three key ways that stigma affects the health and well-being of Canadians. Firstly, it reduces access to and quality of protective resources and health services. Secondly, it increases the risk of chronic stress and poor coping responses, and finally, it puts stigmatized people at higher risk of assault and injury.

We are very fortunate in this country to have relatively free and open access to our healthcare system. And while we are not faced with massive medical bills like our peers in the United States, we must also recognize that our healthcare system is not free and open to all equally. Our medical system still relies on outdated textbooks that do not properly represent the very real and very different medical needs of women, and in particular black women. Our medical system also lacks the empathy and understanding needed to properly communicate with folks with ASD, English as a second language1, or those who have experienced trauma.

I am a white, thin, cisgender woman, who visibly presents as “healthy”. I have an immense amount of privilege, especially in healthcare spaces and even then I am constantly faced with the challenge of not feeling heard and ultimately being misdiagnosed.  Originally, I hoped to write this as a way to help me process my experience and feelings about my misdiagnosis. Very quickly after starting, I realized I needed to share my experience as a way of documenting my journey along with all that I have learned as a “sick” woman navigating our healthcare system.

From diagnosis to undiagnosed

There is no one to blame, but I still grieve for the quality of life I lost because I didn’t have this key piece to my human puzzle.” (Speaking about being diagnosed with ASD in their 30’s)

- Ten Steps to Nanette: A Memoir Situation by Hannah Gadsby

I was 17 when I was diagnosed with ankylosing spondylitis, an autoimmune disease that helped explain the back pain that I had been experiencing since I was a kid. I was 30 when I was officially undiagnosed and reentered the broader healthcare system looking for answers.

Many things happened in those 13 years including countless tests and bloodwork, numerous lost days to fatigue and chronic pain, drugs that never seemed to help, and even a clinical trial. It has only been recently that I learned how to properly advocate for myself and began to redefine my relationship with my AS diagnosis.

My chronic pain journey is not something that I speak about often or even share with people in my life beyond my close friends and family. Truthfully, for a number of years I sort of just accepted it and ignored it. It was a part of my life and I did things like physio and took medication to manage it, but I tried not to give it too much attention. I was diagnosed as a teenager and quite frankly other things going on that at the time felt more important and like a bigger deal. It wasn’t until I started getting older and it began impacting my life on a daily basis that I was forced to do things like tell my employer or friends and partners.

My relationship with my pain and more specifically my autoimmune disease was uncomfortable. I carried around a weird sense of guilt and internal shame that I lived in a body that was actively attacking itself. It felt like I couldn’t control the reason for the pain and often the things that doctors told me would help, like medications and exercise, didn’t really do anything to improve my quality of life. My chronic pain is also invisible and I became really good at hiding it, so if I didn’t bring it up, no one really knew.  I can say now that this strategy was not my best, but I can meet that version of myself with compassion knowing that I was young, didn’t know anyone else experiencing what I was, and didn’t know how to properly advocate for myself with my healthcare team.

I think it’s important to pause and add some context about ankylosing spondylitis and how I was diagnosed before telling the rest of my story.

Ankylosing spondylitis is an inflammatory disease that impacts the spine and can eventually cause vertebrae to fuse. As well as being a form of inflammatory arthritis it is also an autoimmune disease, meaning the body’s own immune system attacks healthy tissue and causes inflammation. Symptoms usually start in early adulthood and can cause inflammation in other parts of the body as well. People with AS typically experience inflammation and pain between the base of the spine and the pelvis (SI joint area), the lower back, hips, and some experience inflammation of the cartilage between the breastbone and ribs.

AS can be difficult for doctors to diagnose as it has a wide range of symptoms that can often be mistaken for other illnesses. From what I understand, it is very common for folks to go a long time before being finally diagnosed. AS also presents with very dynamic symptoms, meaning that pain often comes and goes and flare-ups can happen suddenly and with no warning.

Because diagnosing the disease can be quite challenging, there are a number of factors that help doctors, specifically rheumatologists, successfully diagnose folks with AS. Firstly, about 90% of people who develop AS have a gene called HLA-B27 - not everyone who has AS has the gene, but it’s the first thing doctors will look for as an indicator. Secondly, for most folks diagnosed with AS the inflammation of their SI joint will show up on an X-ray, or at the very least an MRI. Most patients with AS also have higher than average inflammatory markers in their blood work. Ultimately, a lot of the diagnosis comes down to a combination of factors that include how long you have been experiencing the pain, and the comprehensive list of your symptoms. More recently, I have learned that if a patient does not have the gene and rheumatologists aren’t confident with the diagnosis, they will prescribe a biologic medication to see how you respond. These drugs work by blocking or inhibiting various proteins that trigger the inflammation and cause the pain - if the drugs help then it’s a good sign you have AS, and if they don’t then it’s fair to assume something else is causing your chronic pain.

I was diagnosed with Ankylosing Spondylitis younger than most at 17. I had been experiencing lower back pain for as long as I could remember and it made doing normal kid things kind of a pain (literally). It wasn't stopping me from doing things but it was definitely cutting the fun short and I would often have to lay down or rest to manage the pain. Thankfully, I had parents who believed me and a fantastic family doctor who was committed to figuring out why a young teenager with no other health issues was having these problems.

I had x-rays and bloodwork and eventually an MRI which showed bilateral sacralities, or inflammation in my sacroiliac joints. While I don’t have the HLA-B27 gene or any family history of AS, my symptoms plus the MRI results were enough information for my rheumatologist to diagnose me with ankylosing spondylitis.

At the time, I was seeing a rheumatologist who everyone told me was one of the best in the region and I was frequently told how lucky I was to be one of her patients. While I recognize that she was indeed very well educated and I’m sure fantastic for many other patients, she was incredibly lackluster to me. I was an anxious teenager who was experiencing pain and she was a busy doctor who had the bedside manner of a stale Cheeto. Every appointment was with a different student doctor and my rheumatologist would pop in for five minutes to review the notes and ‘check in’. It always felt rushed and very transactional. Under the care of this doctor, I tried many different medications to no avail, and eventually switched doctors when I moved cities.

Throughout the years I have tried many different things to manage my pain including medication, exercise, diet, and sought alternative medical practitioners. I was able to manage the pain okay, but over time my symptoms started to get worse. Over the last year, my chronic pain became more pervasive and began to impact my hips in addition to my lower back. I turned to my current rheumatologist to help create a new game plan. At that point, I had tried a number of the drugs on the market from regular NSAIDs to biologic injections and none of them had made a serious difference. This time around there was a new drug on the market and my doctor was hopeful it would be a game changer. I started the drug at the end of 2022 and patiently waited for it to kick in. In the meantime, I requested an MRI as I was concerned that my disease had progressed and the possibility of fusion of my spine was looming.

In February 2023, I visited my rheumatologist to review my MRI results and assess why my new medication wasn’t improving my pain. The appointment most definitely did not go as planned. What I learned instead was that my most recent MRIs were clear and showed no signs of active inflammation or damage to my SI joint or lower back. My rheumatologist stated that given my healthy MRI results, the ineffectiveness of my medication, and the high level of pain I was still experiencing that I was most likely misdiagnosed.

My first reaction to this information was total confusion and shock. For 13 years I have been visiting doctors, getting tests, and taking medication, all under the assumption that I have an autoimmune disease that caused chronic inflammation of my lower back - suddenly this was all wrong.  My next reaction was rage. Not rage at any one particular person or moment, but at a collection of them. How could so many doctors and practitioners get it wrong, and keep getting it wrong for so long? How did no one think to ask more questions, do another MRI, or consider that not all of my symptoms added up? My next thought was, how did I not know what was going on in my own body, and is this all in my head?

During the appointment, I was told that some people just have chronic pain and we never understand why, and something that suggested I should feel grateful that I don’t have an autoimmune disease. While my doctor was very kind and empathetic to how difficult this news must be for me, she was also pragmatic in that I would need a second opinion just to be sure and we would take it from there. Spoiler alert, the second opinion doctor agreed that I was misdiagnosed and recommended that I return to my family doctor to begin trying to understand what else might be causing my chronic pain.

Even as I write this I will admit that I have not fully processed and worked through how I feel about this news. The first few weeks felt surreal, like my whole life I had been told I was an apple and now suddenly I was an orange. There was still an active pandemic happening and suddenly I was no longer high risk and didn’t need to carry as much fear. Suddenly, I went from having a clear diagnosis to not having any idea what was happening in my body and why. Suddenly all my symptoms felt disconnected and no longer tethered to one singular answer. Suddenly I was back to square one and had to reenter the maze that is the healthcare system from the very start.

As I began to process this news I began having the overwhelming urge to talk to everyone I knew about my experience. To tell everyone what I had learned about the system and encourage people to take up more space in their own healthcare journey. I became infuriated with the lack of care I had received and my inability to advocate for myself. I began reading story after story of other women who struggled to even get a diagnosis in the first place, and people whose experiences were disregarded by their doctors and other professionals. I became totally fixed on the fact that while I felt like I had received at least some version of the health part, I hadn’t really received any of the care in health care.

At the end of the day, it's a job

In many ways, your doctor determines the quality of life you’ll live with incurable/long-term illness, as they’re the one guiding your treatment. You have to trust and rely on them. We have only so much control over our unpredictable, forever-sick bodies. But we do have control over who we choose to care for them.”

- What Doesn’t Kill You: A Life with Chronic Illness - Lessons from a Body in Revolt by Tessa Miller

I have always had a healthy amount of respect for doctors and their knowledge. Do you have a cough? See a doctor. Does your ankle hurt? See a doctor. Something is wrong and Googling didn’t help? See a doctor. I think most of us who have grown up in a Westernized culture have the assumption that what they say can be trusted and that they are a source of truth and assistance. Now listen, even after going 13 years with the wrong diagnosis I still trust my doctors. I still believe we need vaccines and I still believe in science. What has shifted for me, is how much all-knowing trust and power I put in their hands versus my own.

At the end of the day, doctors are skilled professionals doing a job, just like the rest of us. They went to school, got a degree (likely many), and have dedicated countless hours and years to their craft and knowledge. This fact alone, however, does not mean that they have all the answers, will not make mistakes, or are even particularly good at their job. We all make mistakes at work, but not all of us have to care for the physical health and well-being of another human as part of our job responsibilities.

While I deeply believe that the responsibility is overwhelmingly in the hands of doctors and our health care system to prioritize the needs of patients, I also recognize this will not change overnight. For years I shared my various symptoms with my doctors and there were always a few symptoms that weren’t common to my diagnosis. My doctors would say things like “Oh, that’s not something we often see in people with AS but I wouldn’t worry”, or “Hmm, no that’s not a symptom of AS” and leave it at that. They would very rarely ask follow-up questions or encourage me to seek additional support - it always felt like it wasn’t a big deal and was brushed off.

I recognize now that I should have taken that as a queue to talk to my family doctor about the symptoms that sat outside my AS diagnosis. But that often isn’t the reality of what happens for those of us with chronic illnesses. When you see a specialist doctor they often become your primary health care practitioner. Sure, you don’t go to them for a common cold or sprained ankle, but if something starts happening in your body that feels related to your disease, you bring it to them. You trust that they know your diagnosis better than anyone and that they will point you in the right direction given your specific healthcare needs. It’s like you have this big diagnosis bucket and you just throw all your chronic pain-related ailments in it because well, at the end of the day, I have chronic pain and an auto-immune disease and no one has told me where else to throw them.

Hindsight is most definitely 20/20 and I can look back now and recognize that the reason my additional symptoms never added up is because we weren’t even using the right bucket. At no point did any doctor involved in my case consider this possibility. I believe that confirmation bias among those involved seriously hindered their ability to think critically. When my rheumatologist told me that I was most likely misdiagnosed she admitted that she never considered this as a possibility because of how well-regarded my diagnosing doctor was. Hearing this was shocking to me and it should be to you too.

Confirmation bias in health care is “the tendency to give greater weight to data that support a preliminary diagnosis while failing to seek or dismissing contradictory evidence2". This can cause doctors to dismiss new diagnosis possibilities and lab results, or not consider additional diagnostic testing. Research suggests that “confirmation bias (bias toward existing beliefs) and anchoring bias (bias on the basis of initial data) are common causes of premature close on an incorrect diagnosis2". There are many ways in which confirmation bias shows up in our health care system and none of them serve the patient. Not only do doctors need to consider this possibility when providing a diagnosis but they also need to consider this possibility before prescribing serious medications or when seeing a new patient.

The existence of confirmation bias in healthcare is also something all patients need to be aware of. While I have a lot of anger and frustration towards my diagnosing doctor, I don’t place blame on them alone. Misdiagnosing happens, again - doctors are people doing a job and sometimes they get it wrong. It is the confirmation bias and medical assumptions that were continuously made over the course of 13 years that causes my rage. Finding the right balance between trusting your doctors and actively questioning your care is incredibly difficult. What I have come to realize is that it requires some combination of the relationship you maintain with your doctor, your ability to advocate for yourself and your needs, and your relationship with and understanding of your own body and what is happening within it.

If you are interested in learning more about the role that doctors play in a chronically ill person’s life and how to assess what makes for a good doctor over a not-so-good doctor, I would highly recommend reading Tessa Miller’s book What Doesn’t Kill You (specifically chapter 2).

They are there for you, not the other way around

“Lot’s of great doctors exist, and I still believe that most of them sincerely want to help people above all else. The American healthcare system requires that providers work long hours in stressful conditions, churning through as many patients as they can like an assembly line. Patients can be demanding, unpredictable, and downright mean. Still, the burden of professionalism and gaining of trust should remain on the health-care provider - not the patient, who, in good faith, just wants to feel better.”

- What Doesn’t Kill You: A Life with Chronic Illness - Lessons from a Body in Revolt by Tessa Miller

I went more than 10 years without getting an MRI because my doctors never felt like my changing symptoms warranted one. Of course, the flip side of this is that I also went ten years not advocating for myself to get an MRI. I don’t share that fact as a way of blaming myself, I trusted that if I needed one, the doctors would request it. I share this because I will never make that mistake again and urge you not to either.

If I know one thing to be true it is that you know your body better than anyone else. Sure, the doctors might know the symptoms and more about bodies in general - but they do not know more about yours. Regardless of how a doctor may make you feel, you are a full person experiencing this pain and you are so much more than notes on a medical chart. You may not always be able to articulate what is going on inside your body but it is the responsibility of the doctor to support you as a full person, and not just a patient, problem to be solved, or body to be diagnosed.

For many years I never felt comfortable speaking up with my doctors, I knew some things didn’t add up but overwhelmingly I trusted their care. I wish I knew how to take up more space in those doctors’ offices. Health care should center the care part above all else and you should be able to ask questions, disagree with a treatment plan, or ask for a second opinion. The average doctor’s appointment lasts 15 minutes and this just isn’t enough time to provide the level of care that most complex patients require. Remember that doctors are in the room for you, to help you - not the other way around. The doctor or health care professional should be centering your individual needs and you shouldn’t feel rushed or ignored by anyone on your health care team.

Your medical records are your own

“WOMI spelled W-O-M-I all caps. Two syllables, a noun that stands for a woman with a mysterious illness. I had to make this word up myself. I would have preferred a committee, or a wealthy patron, whoever’s in the business of naming to do it for me but no one volunteered. I’d also have preferred something more dignified than WOMI. Something with gravity, preferably in the Latin. Something that provoked the right response which in my case is holy fucking shit. But because there is no name for what’s wrong with me people don’t say holy fucking shit. They ask if I’ve tried green juice or positive thoughts. Having a word helps.”

- The Lady’s Handbook for her Mysterious Illness by Sarah Ramey

In early 2023 I went for multiple MRIs which started me on my journey to being undiagnosed. While I was sitting in the waiting room at some ungodly hour waiting to be called, I saw a poster for a website that provides electronic access to your medical imaging. I remember thinking at the time that this was a smart idea given our Provincial Government does not offer easy and open access to your own personal health records. I stored that bit of information away in my brain and forgot about it.

A few months later I found myself signing up for PocketHealth and requesting access to all of my imaging scans and reports. After I was informed that I was likely misdiagnosed I started to feel uncomfortable with the fact that if I wanted to get an independent second opinion, or turn to other practitioners, I didn't actually have any of my own reports or health records to bring with me. When you start showing symptoms at age 10, are diagnosed at age 17, and are now 30, you sometimes forget the small details of your entire life’s medical history. I learned very quickly that having your records in hand is an incredibly empowering feeling that provides a sense of authority and ownership over your experience.

I believe that a key to true patient-centered care involves patients having access to their personal health records. Firstly, it can enhance communication between patients and doctors as it allows patients to better understand their health condition and be more engaged in their care.3 Secondly, most doctors rely almost exclusively on verbal communication to provide serious health updates to their patients, and this is simply not good enough for most of us. Having access to your own records means that you can easily refer back to previous notes rather than relying on your memory alone. Overall research suggests that patients feel more satisfied, informed, and engaged in their care if they have access to their own health information.4

Another reason I believe it is important for patients to have ownership over their own personal health records is to ensure key documents do not get lost, destroyed, or removed from your file without your consent. In 2023 when I was trying to understand how I was diagnosed I realized that a key piece of the puzzle would be the 2009 MRI which showed inflammation in my sacroiliac joints and triggered a diagnosis of AS. When I tried to obtain a copy of this MRI to have it reassessed I was told that it no longer existed.

The College of Physicians and Surgeons of Ontario states that physicians must ensure medical records are retained for a minimum of 10 years for adult patients, after this, records may be destroyed. I was heartbroken. A key piece of my medical history was destroyed because of a policy that truthfully prioritizes the storage needs of the college over the needs of patients. 10 years is nothing in the grand scheme of a lifetime of chronic illness. I will never be able to access that MRI and my doctors will never be able to fully understand what was happening in my body at the time I was diagnosed.

I understand that some doctors have hesitations regarding giving patients access to their own personal health records. Some fear that it will place an unnecessary burden on patients and that they may not understand the medical jargon in their charts. Research overwhelmingly suggests however that while these concerns are valid, they are minimal in nature and do not outweigh the benefits. Having access to your own records not only provides a sense of ownership and engagement in your own care but also provides a level of healthcare freedom to patients. Once I gained possession of my available medical imaging reports, blood work, and referral reports I was able to review my charts with practitioners outside of my immediate care team (physiotherapist, osteopath, etc.). Another unexpected benefit was being able to go back into my medical records and review 13+ years of notes that validated what I had been experiencing in my body since I was a child. Patient-centered care looks like patients being actively involved in their own care and this starts with having access to our personal health records and gaining patient consent before destroying health records.

Note: I would like to take this opportunity to note that Ontario is currently moving towards electronic health records via the eHealth Ontario initiative. While it is a step in the right direction, it is currently not robust enough to provide many of the benefits stated in the cited research. I will also note, some health regions also offer electronic health records (UHN in Toronto for example) however, they are specific to the services from that health centre and are not exhaustive.

Sick young people become sick adults

“A successful transition ensures care that is continuous, coordinated, and adapted to each youth’s development and maturity, while improving (or at least maintaining) disease control, patient satisfaction, quality of life, and social participation throughout young adulthood.”

- A call for action: Recommendations to improve transition to adult care for youth with complex health care needs by members of the Canadian Paediatric Society.

One of my earliest memories of being in pain was when I was around 10 or so years old. Growing up my dad would build an outdoor skating rink in our backyard for the winters. My brother and I, along with some of the neighbourhood kids, would skate on that thing all the time. We would skate around to music, play hockey, or just enjoy a solitary skate to avoid doing homework. I remember absolutely loving it. What I didn’t love as much though was the pain that came with skating. I would skate for a half hour and experience so much lower back pain that I would need to come inside and lay down. In the start, I think we all just assumed it was growing pains, or that maybe I was doing it wrong and skating weird. Over time though we realized that this pain would show up in other aspects of my life and wasn’t so easy to deal with.

I am incredibly grateful that my parents always took me and my pain seriously. I never felt like I was being ignored or dismissed because I was “too young” to have back pain. My parents championed for me with my doctors, and continue to play an engaged role in my health journey today. I don’t remember exactly how old I was when we went to my family doctor to start figuring out the cause of the pain but I think I was around 15 or 16. I remember it taking a lot of appointments, tests, and bloodwork for the rheumatologist to finally land on the AS diagnosis at age 17.

At some point between the age of 17 and now I went through the transition of being a minor with a chronic illness and an adult with a chronic illness. Legally I would have happened at 18, but practically I’m not exactly sure when that transition happened. At some point, my parents stopped attending my appointments with me and my doctors went from talking about me to my parents to addressing me directly. At the time I don’t remember it being very different, or feeling like I needed any sort of transition, but now as an adult, I recognize that a transition period would have been incredibly helpful.

Research suggests that the lack of care integration from pediatric to adult care can negatively impact health engagement and health outcomes as the patient enters adulthood and that youth need to be viewed as partners in healthcare transitions rather than barriers.5 Not only does an articulated transition period help doctors identify any challenges the youth might face, but it also allows the patient to begin taking ownership of their own care. Learning to take up space, ask questions, and generally be engaged in your own health care is not something that comes naturally to all and it is not often encouraged during your 15-minute doctor’s appointment.

Children and adolescents with complex medical needs are growing in numbers in Canada and often require ongoing health support to maintain healthy into their adult years. Doctors and parents need to be educated on the importance of providing a transition period and properly equipping youth to tackle the many challenges they may face as they manage their own care. If you would like to learn more about the many ways that doctors, parents, and caregivers can support youth through a transition period I highly recommend checking out the article ‘A call for action: Recommendations to improve transition to adult care for youth with complex health care needs’ by members of the Canadian Paediatric Society, as well as Health Hub in Transition.

Ableism is quite literally everywhere

“There is a secret society of sorts that no one, not even the members, have heard of. We don’t look alike, we don’t dress alike, and we’re from all over. There is no secret handshake, no meeting place, no sypher. We are the women with mysterious illnesses and we are everywhere.”

- The Lady’s Handbook for her Mysterious Illness by Sarah Ramey

In 2017, Statistics Canada reported that one in five (22%) Canadians aged 15 years and over have one or more disabilities. That is roughly 6.2 million people in Canada that are experiencing disabilities related to things like pain, flexibility, mobility, and mental health. 6.2 million people who navigate our world, our cities, and our spaces, differently than the rest.

There are many ways that ableism shows up in our society. Whether it’s in restaurants with inaccessible washrooms, transit stops that don’t prioritize accessibility during construction, education systems that don’t accommodate the needs of children and adults with ASD, or our health care system that triages emergency care based on who is perceived to most likely benefit. Ableism shows up in our language, our hiring process, our media, and our policy. Folks who are disabled are often forced to prove their disability to access the necessary care or are forced to hide their disability so as to not impact their opportunity.

As previously shared, I have nearly all of the privilege possible. I am a cis, white, able-bodied, middle-class, English-speaking woman living in a major city. In 2021, before learning of my misdiagnosis, I began seeking additional medication support to treat my increasing pain. The biologic medication that I was prescribed has a hefty price tag and I knew I would need to turn to the Trillium Drug Program for financial assistance. For those who may not be familiar, the Trillium Drug Program is a publicly funded drug program that supports Ontario residents who have high prescription drug costs in relation to their net household income. When you start your Trillium journey you provide a copy of your prescription and some income documents to help Trillium determine what your deductibles and co-payments will look like. The application process for Trillium was quite accessible in my experience, however just because you are accepted for Trillium benefits does not mean that you are automatically good to fill your specific prescription.

Often times when you are prescribed a more intense drug, you are connected directly with the pharmaceutical company and are provided with a customer account rep and a nurse practitioner who oversees your file. While they are there to support you through starting the drug and any side effects, they are also there to support you in actually accessing the drug with your insurance provider. At the end of the day, they work for the drug company and their priority is to get you on the drug and paying full price. Because of this shared common interest, they supported me through the application process to get my prescription cost covered by Trillium.

My experience accessing support through Trillium remains high on my list of the most frustrating and invalidating experiences in my chronic pain journey - and that’s saying a lot. What Trillium does not share is that you will need to prove to them that you are worthy of receiving this drug. Despite having a diagnosis for more than ten years, having previously tried countless other medications to no avail, and a prescription from a Rheumatologist, the folks at Trillium deemed I was not unwell enough to warrant the price tag and I was denied coverage. This was an incredibly invalidating feeling. I was in too much pain to continue on without intervention, but I apparently wasn’t in enough pain to access the drugs my doctor thought I needed.

Thankfully due to the sheer perseverance and shared frustration of my drug rep nurse, we were able to appeal and overturn the decision with additional historical medical records (see the importance of having access to your own records above). This process was long and awful. It felt like the reality of my daily struggles were being questioned by some person in a cubicle downtown who was just clicking some boxes. Throughout the entire experience, I felt like a shitty sum of my broken parts rather than a complete person who has real pain, feelings, and a desire to live without constant pain.

If I did not have the support of the nurse who was equally as motivated to see me on those drugs, I would not have gained access. I cannot even begin to imagine how much more difficult and painful the process to access care in the form of medication would have been if I did not speak English as my primary language, experienced any cognitive challenges, was not tech savvy, or had any other support needs. The Trillium Drug Program exists to serve those of us who live at the cross-section of disability or illness and low income and yet it is not an accessible or empathetic program.

Truthfully, this is one tiny example of the many ways in which the world and society is not built with accessibility in mind even in the systems that are meant to support those who need it most. The Curb Cut effect tells us that designing spaces with accessibility in mind serves all. Angela Glover Blackwell who coined the term ‘curb cut effect’ found that “when the nation targets support where it is needed most - when we create the circumstances that allow those who have been left behind to participate and contribute fully - everyone wins.”6 Accessibility isn’t only about providing those with disabilities more access, it’s about creating spaces that are more inclusive and comfortable for all people to thrive, including disabled people.

“A world that is more tolerant of difference is a safer and more nourishing place for everyone.”

- Unmasking Autism by Devon Price, PhD

As previously noted, there are so many ways that ableism shows up in our society. This list is by no means exhaustive, but here are a few topics linked to ableism that you might not have considered:

  • Not wearing a mask in public spaces when sick or during a global pandemic
  • The importance of legalizing cannabis and the ability to smoke in public spaces
  • Understanding the need for flexible work schedules and hybrid working
  • Including the salary and health benefits in job postings
  • Blaming entire health conditions on vaccines, diet, or other life choices
  • Feeling it is within your rights to use an accessible washroom when you are not disabled
  • Saying things like “normal”, “high-functioning”, “you don’t look sick”
  • The majority of our schools and public buildings

Another important part of this conversation is the intersectionality of disability and race, queerness, trans rights, fatphobia, poverty, and all marginalized communities. I encourage anyone who is looking to learn more about ableism and disability rights to visit the Council of Canadians with Disabilities.

A note from Tessa Miller’s book that I will quote here as well:

“Disability includes any mental, physical, intellectual, or sensory impairment. Sometimes, chronic illness and disability overlap; sometimes, chronic illness leads to disability and vice versa. Some people identify as chronically ill but not disabled, disabled but not chronically ill, or chronically ill and disabled. Able-bodied means not disabled. (Some people also use non-disabled.)”

- What Doesn’t Kill You: A Life with Chronic Illness - Lessons from a Body in Revolt by Tessa Miller

Know someone with a chronic illness or chronic pain? Listen up.

“You most likely know one of us already. a coworker, an aunt, a sister, some beleaguered old girl endlessly dealing with her health issues. She’ll be reluctant to talk about the particulars but noticeably lacking in a solid diagnosis. Most people privately agree she actually suffers from an acute case of hypochondria.”

- The Lady’s Handbook for her Mysterious Illness by Sarah Ramey

First off, thanks for even making it this far in my ramble and I hope that you continue to seek out stories and perspectives from others who live with chronic illness and pain. I would highly recommend reading Chapter 16 of Tessa Miller’s book as it wonderfully speaks to the things chronically ill folks hope others would understand about our experience. In addition to her fantastic list, here are a few things I have learned from my own experience that I believe are worth adding to the discussion.

Ask us what we need

When someone talks to you about their chronic pain or illness, meet them where they are or ask for what they need. Do not shower them with your positivity of ‘it could be worse’, or ‘at least it's not this other awful thing’, ‘I'm sure it will all work out’, or "wow, you're doing such a good job at hiding it". This person's world is upside down when you are right side up. They move through the world differently and to pretend otherwise does a disservice to them and your attempt in supporting them.

When I was first undiagnosed and started seeing additional health care practitioners I was met with these hopeful messages and an expectation that I was supposed to feel relieved in this outcome. People would say, ‘what a relief you don't have an autoimmune’, and how exciting it was to start from square one with all the possibilities ahead. This was never, and will never be comforting.

Stop the unsolicited medical advice

If they don't ask for medical advice don't give it. I received so much unsolicited medical advice when I was living with a diagnosis and even more now. Everyone has a brother, sister, cousin, friend of a friend who tried something once and it was a miracle - we know. Trust that this person is processing the information they have available to them and working to find a solution. Trust that they do not want to live in a painful body and that they take this seriously and are seeking the medical support they need.

Trust us

Trust that their pain and discomfort is very real, and no one chooses a life of chronic pain or Illness. If we are unable to attend your event, cancel plans last minute, or need a minute, know that it is because we are in pain or are processing what is happening. I know it can be challenging as a friend or family member of someone with a chronic illness, but try to not take it personally or make them feel guilty for listening to the needs of their body.

Educate yourself

Educate yourself about their illness and situation if you care for them and their well-being. Read books, listen to podcasts, and ask questions. Recognize that the person who is chronically ill may not want to talk about it all the time and may not have the energy to educate you on their illness. If they do not engage in the conversation, take that as a sign to take on the task of educating yourself. I have included a list of books to read below for your reference if

“More than a few doctors implied that whatever seemed to be the problem, it suited me. This is one of the biggest phycological tormentors of the invisibly ill, the disconnect between the way you feel and the constant refrain from family and friends that you look just fine.”

- The Lady’s Handbook for her Mysterious Illness by Sarah Ramey

Are you someone who lives in a sick body?

First, I see you, I believe your pain, and I am so sorry you are going through this. If you need someone to talk to who has experienced the challenges of living in a sick body, navigating the system, or just generally showing up every day when you're exhausted - reach out.

Practitioners in the GTA

If you are in the Toronto area and are looking for incredible and compassionate practitioners to add to your care team. Here are mine and they are all amazing, skilled, and generous practitioners.

  • Family Doctor - Dr. Patricia Smith at Four Village Health Centre (you have to be local to the west end of the city but honestly I would move to be in her care because she is phenomenal.)
  • Massage and Acupuncture - Marlee Hirson at Bloom Health Clinic
  • Osteopath - Leah Henderson at Roncesvalles Osteopathy and Wellness

Books I read and loved

I have always loved reading stories from others. I appreciate knowing that some of my experiences are shared, and find refuge in their stories. Here is a list of books I have read and loved.

  • The Lady’s Handbook for her Mysterious Illness by Sarah Ramey – Covers a range of different illnesses and auto-immune diagnosis
  • Unwell Women: Misdiagnosis and myth in a man-made world by Elinor Cleghorn – Looks at the many ways our healthcare system has failed women, also covers topics related to auto-immune
  • What Doesn’t Kill You: A Life with Chronic Illness - Lessons from a Body in Revolt by Tessa Miller – Experience of living in a sick body, specifically covers IBD and Crohn’s
  • What My Bones Know by Stephanie Foo – Speaks about complex PTSD and endometriosis
  • Ten Steps to Nanette by Hannah Gadsby – Memoir that covers topics of assault, trauma, and autism spectrum disorder (ASD)

Other topics that I think about but didn't make it into this writing

  • Feeling unwell in a ‘healthy’ body
  • Chronic illness and grief
  • The weight of a diagnosis and therefore the weight of not having a diagnosis
  • The rise of autoimmune diseases in North America
  • The fact that 80% of people with autoimmune diseases are women
  • The links between research dollars and what we collectively give a shit about
  • The link between those last two points... *cough* patriarchy *cough*


Some sources are directly linked throughout the text, if not, the citation or link is noted below.

This began as a way for me to process my experience and quickly became something that required sources, so if I missed a citation please forgive me! If you read something you found interesting and a quick Google didn't find the source for you - send me an email!

  1. Affirming Immigrant Women’s Health:   Building Inclusive Health Policy
  2. Confirmation bias in medical decision-making
  3. Ferreira A, Correia A, Silva A, Corte A, Pinto A, Saavedra A, Pereira AL, Pereira AF, Cruz-Correia R, Antunes LF. Why facilitate patient access to medical records. Stud Health Technol Inform.
  4. Curtis, J., Cheng, S., Rose, K. & Tsai, O. (2011). Promoting adoption, usability, and research for personal health records in Canada: The MyChart experience. Healthcare Management Forum, 24, 149.
  5. A call for action: Recommendations to improve transition to adult care for youth with complex health care needs
  6. The Curb-Cut Effect By Angela Glover Blackwell