My mother has suffered from severe migraines for over 30 years now.
You may have heard the term “migraine” in passing, used synonymously with “headache”, but I can assure you that the reality of a migraine can be much more devastating than your average headache. The onset of a migraine usually begins with a throbbing pain at the base of the neck or behind the eyes and gradually develops into something much more sinister and debilitating. At its worst, sufferers are left bed-ridden with an intense and unyielding headache that lasts anywhere from hours to days.
Hyper-sensitive to light and sound, my mother would often barricade herself in the darkness of her room with blackout curtains, only allowing my sister or I to enter to apply pressure to her head so the pain would subside enough to allow her to steal a few hours of sleep or to hold her hair back as she threw up, due to waves of nausea that came along with the migraine. From a young age, I watched my vibrant, energetic and youthful mother transform into someone else for at least four days nearly twice a month. Someone easily irritable, long-suffering and incapable of even warming up dinner for us, let alone stomaching it for herself. Often, if her condition hadn’t improved within two to three days, she was left with no choice but to call for an ambulance. Dehydrated, unable to open her eyes long enough to drive to the hospital alone, desperate for some alleviation of the pain and on the verge of pulling her hair out, my mother often spent odd hours of the night in emergency rooms with IV’s of saline and sometimes morphine.
Thankfully, through years of trial and error with medications and participating in experimental preventative treatments, my mother’s migraines have improved in severity and frequency. Chronic migraines are categorized as having 15 or more headache days a month, and at its worst my mother only suffered from eight headache days a month, which have now subsided to approximately three (which occur with much less intensity). When these episodes do take place however, they still leave my mother unable to get out of bed, let alone attend work.
For context, Migraine Canada is an organization aimed at helping improve the quality of life of migraine sufferers in Canada in a variety of ways. When exploring their website, it becomes evident that my mother is not an outlier; in fact, the statistics are quite striking. Migraine Canada cites an article published by The Scandinavian: Journal of Work, Environment & Health titled ‘The relationship between chronic conditions and absenteeism and associated costs in Canada’, which found that out of 28,000 Canadian employees, regarding 16 health conditions, “migraine came third for cost related to missed days at work after back pain and mood disorders, appearing more costly than asthma, diabetes, cancer and arthritis”. The Canadian Disability Benefits website corroborates these facts, stating that “There are about Four million Canadians who suffer from migraine headaches”. Not only this, but migraines are ranked amongst the top 20 disability causes by the World Health Organization, where they go on to state that “a severe migraine attack is as disabling as being quadriplegic, psychotic, or in a terminal stage of cancer. It is extremely disruptive to productivity and quality of life.”
With all this compelling information, the question remains as to why there isn’t more awareness surrounding the condition. As to why my mother had to construct a ready list of excuses to pull from to send to her employers for the days she could barely open her eyes long enough to send them an email, afraid that the truth wouldn’t be sufficient. Migraine Canada’s ‘Disability and Migraine’ page opens with the heading: ‘You missed work because you had a migraine. Which do you get from your employer and co-workers: support or suspicious looks?’ It goes on to assure readers, “Migraine is disabling.”
This isn’t the story of migraine sufferers alone, however. This isn’t even the story of the stigma surrounding chronic & episodic illness in the workplace, or the casual ableism that runs rampant in our society. Instead, this is the reality of millions of Canadians living with invisible disabilities.
Just like the definition of disability, the definition of an ‘invisible disability’ varies in contexts of medical terminology, social activism/awareness and legislation. A disability, in broad terms, is a physical, neurological or mental condition, that impairs (to varying degrees) a person’s awareness, senses, movement, or activities (Invisible Disabilities Association, 2020). Consequently, an ‘invisible’ or ‘hidden’ disability is acknowledged as a disability that is not immediately apparent or easily recognized by onlookers. These can include a plethora of chronic illnesses (ex. chronic pain), episodic conditions (ex. epilepsy), learning disabilities (ex. dyslexia), mental illnesses, brain injuries, sleep disorders, gastro-intestinal disorders, hearing impairments, and even arthritis and diabetes (according to the Ontario Human Rights Commission on Ontario’s Policy on Ableism and Discrimination Based on Disability, diabetes is included as a disability under section 10 of the code). In 2017, The Canadian Survey on Disability found that approximately 20% of Canadians or 6.2 million participants identified as having a disability. Though the survey doesn’t specifically differentiate between ‘visible’ and ‘invisible’ disabilities we do know (according to the same survey) that nearly 2 million Canadians suffer from a mental health related disability, and The Learning Disability Association of Canada estimates that one in 10 Canadians (approximately 10% of the population) have a learning disability.
The unapparent nature of these disabilities, coupled with the stereotypes surrounding conventional disability, often result in those who possess these conditions being left to not only grapple with their affliction, but also the constant judgements and misconceptions of others. On one hand, individuals face “traditional disability” stigma and ableism socially, professionally and sometimes even legally. On the other hand, individuals with “hidden disabilities” also face unique and equally unjust challenges. These can include facing prejudices in the workplace when applying for disability leave, requesting accessibility accommodations or requesting days off due to their condition. Not only do I have the first-hand experiences of my mother to validate this, but after interviewing two young women with mental and neurological conditions categorized as disabilities, unfortunate similarities became apparent as they both detailed their experiences with limited school accommodations that were often insufficient to meet their needs.
“I used to take tests in a separate room to reduce stimulus and stress, but that isn’t available to me anymore,” said Jane*, a secondary school student diagnosed with Asperger’s Syndrome (ASD) and ADHD. Astrid*, another high-school student, suffers from severe Borderline Personality Disorder and stated “I have an [Individual Education Plan] in school but am now being homeschooled due to my mental illness.”
Academic assistance for those with invisible disabilities is often more complex than installing ramps or allowing an interpreter into a student’s class. Developing a plan that allows these students to reach their full potential requires consideration and awareness that many schools do not possess or provide. Knowing both interviewees personally, as bright students and powerful young women, it is concerning to note that, “proportionately, adults with disabilities (are) only about half as likely to get their university-level degrees as adults without disabilities” (Easter Seals, 2016).
Misconceptions and stereotypes are also a huge hurdle that those with invisible disabilities must confront daily. Common examples include when someone utilizes a parking spot designated for accessibility but doesn’t appear to have any physical signs of a disability at first glance, or when someone utilizing a wheelchair stands up in public. Onlookers are often confused or even angered by the occurrence due to the lack of awareness, representation, and education surrounding invisible disabilities. Stigma and discrimination against hidden disabilities can manifest in a variety of overt and harmful ways such as refusing to provide accommodations for an individual or going so far as refusing to believe someone has a disability or suggesting that they’re “faking it”, simply because it is not superficially evident to a stranger.
“I have been told to my face that…I’m doing it for attention,” Jane* revealed, “Tics are not unusual for people with autism, anxiety, and ADHD. I have all three, and my family still makes fun of me for it and tells me to stop.” And she is unfortunately far from alone. “…Sometimes people hear my diagnosis and think that because I come across as a normal functioning 16-year-old girl that there’s no way I’m actually sick,” furthered Astrid*. “That is incredibly invalidating and makes it so much harder for me with my treatment.”
These prejudices present most commonly in microaggressions: phrases such as, “You don’t ‘look’ sick” or “I never would have known you were disabled”. Conclusions like these are detrimental not only to the person on the receiving end of those comments but also to the overall disabled community and their battle against the stigma of disability. Statements such as these imply that that disability comes in a certain ‘look’ along with other negative assumptions. Sarah, a young woman diagnosed with Type 1 diabetes, is no stranger to these harmful stereotypes. She is often faced with comments like “I guess your diet was too unhealthy, huh?” and “Oh! But you’re not fat!” despite there being no correlation between diet or weight and Type 1 Diabetes. She elaborates on how these comments are detrimental to those diagnosed. “It makes people feel self conscious and can be upsetting, especially to those who have mental health and body image issues, which are also really prominent in the T1D community.” The truth is, disability is an incredibly broad term, encompassing hundreds of different conditions that leave their carriers on a spectrum of mental and physical functionality. Depending on the condition, this ability level can often fluctuate week to week, day to day, or even hour to hour.
“I think with an invisible disability people are much quicker to pass judgment rather than empathy. Nobody would tell someone in a wheelchair to ‘just walk’ and yet many people have told me to ‘just be happy’ thinking that would cure me or something,” said Astrid*, our interviewee with BPD. “I feel people have trouble believing what they can’t see and since they can’t visibly tell I’m hurting from just looking at me, in their minds it’s impossible I could actually be struggling in the ways that I am.”
Drawing from these compelling first-hand experiences and the facts we’ve gathered, it is fundamental to note that those suffering from chronic conditions, episodic illnesses or invisible disabilities, do not owe anyone proof, an apology, or an explanation. We must respect the privacy and ability of these individuals, depending on how much they are willing to share.
Whether or not a person chooses to identify their condition socially as a disability, invisible or otherwise, is a decision for them alone. Just because someone has a condition that may be legally recognized as a disability does not mean that they would identify their condition as such in social settings. Consequently, just because someone has a disability does not mean that they would choose to identify themselves as disabled. As a society, however, we have a moral obligation to collectively work towards de-stigmatizing the notion of ‘being disabled’ or ‘possessing a disability’, so those who need to, feel more comfortable identifying with those labels in order to receive the accommodations and assistance they deserve, without the fear of also taking on the negative connotations of inferiority that come along with classification.
When questioned on the subject, Jane* clearly stated, “Yes, I certainly see my issues as disabilities. It is very obvious to me how different I am from others, and that they don’t struggle with the same things I do.” Astrid* agreed, “I do believe my mental illnesses to be disabilities as they make living day to day life extremely hard [and] I don’t really have a problem legally being labeled disabled, but socially I feel the word is taken in a very negative [way] and carries a lot of stigma, so I wouldn’t call myself disabled in a social sense.” When asked if she would be more open to utilizing those labels if they possessed less stigma Astrid* concluded, “I would be more open to saying I am disabled if it wasn’t so heavily stigmatized, yes”.
However, it is important to note that this is not the case for everyone who grapples with hidden disabilities. Sarah, our Type 1 diabetic, wouldn’t see her condition as a disability and took a moment to delve into her struggle with those labels.
“I once told a friend who had a visible disability that I have diabetes, and she responded with something along the lines of ‘Now we’re both disabled!’ and it bothered me. I didn’t want to call myself that because it made me feel less or weaker than normal people. Now that I’m older, it’s not something that I care about very much, but I still see the power that a word has over a person. I definitely think that these labels hold a lot of stigma and it’s important that we address that disabled people are not weak or less than any other people.”
In the end, when it comes down to it, individuals with disabilities (“visible” or “invisible”) bear the label of a human being before anything else and deserve to be treated as such. Fighting the battle of a medical condition is challenging enough, both mentally and physically, and no one should be forced to simultaneously fight constant harmful stereotypes and prejudices alongside this. With an estimated 1.1 billion people (or 15% of the world’s population), identifying with possessing a disability across the globe, the “disabled” make up the world’s largest minority, and the only minority group that any of us can become a part of at any time (World Health Organization, 2018). I urge you to remember this when considering your role in addressing disability stigma and stereotypes. You aren’t just advocating for a small population; in fact, you are more than likely advocating for friends and family you know, hundreds of thousands of Canadians, and millions of fellow human beings.
*Names have been changed upon request for the privacy of the individuals interviewed
- Angel, Traci. “Everything You Need to Know About ADHD.” Healthline, Healthline Media, 5 Sept. 2020, http://www.healthline.com/health/adhd.
- “Borderline Personality Disorder.” National Institute of Mental Health, U.S. Department of Health and Human Services, 2017, http://www.nimh.nih.gov/health/topics/borderline-personality-disorder/index.shtml.
- Brennan, Dan. “Asperger’s Syndrome: Symptoms, Tests, Diagnosis, and Treatment.” WebMD, WebMD, 2 June 2020, http://www.webmd.com/brain/autism/mental-health-aspergers-syndrome.
- “By the Numbers: Canada’s Growing Awareness of Invisible Disabilities.” ShareLawyers, 18 Feb. 2020, http://www.sharelawyers.com/blog/2019/12/by-the-numbers-canadas-growing-awareness-of-invisible-disabilities.html.
- “Disability and Health.” World Health Organization, World Health Organization, 2018, http://www.who.int/en/news-room/fact-sheets/detail/disability-and-health.
- “Disability and Migraine.” Migraine Canada, 5 Oct. 2020, migrainecanada.org/disability-and-migraine/.
- “Disability in Canada: Facts and Figures.” Easter Seals, 2016, easterseals.ca/english/wp-content/uploads/2016/12/Disability-in-Canada-Facts-Figures.pdf.
- “Factsheet on Persons with Disabilities Enable.” United Nations, United Nations, http://www.un.org/development/desa/disabilities/resources/factsheet-on-persons-with-disabilities.html.
- Government of Canada, Statistics Canada. “Canadian Survey on Disability, 2017.” The Daily – , 28 Nov. 2018, www150.statcan.gc.ca/n1/daily-quotidien/181128/dq181128a-eng.htm.
- “Headache Disorders.” World Health Organization, World Health Organization, 8 Apr. 2016, http://www.who.int/news-room/fact-sheets/detail/headache-disorders.
- “How Do You Define Invisible Disability?: Invisible Disability Definition.” Invisible Disabilities® Association, 8 Oct. 2019, invisibledisabilities.org/what-is-an-invisible-disability/.
- “Learn More.” LDACACTA, 2012, http://www.ldac-acta.ca/learn-more/.
- “Migraines.” Canadian Disability Benefits, canadiandisabilitybenefits.ca/types-of-disabilities/migraines/.
- “Policy on Ableism and Discrimination Based on Disability (2. What Is Disability?).” Ontario Human Rights Commission, http://www.ohrc.on.ca/en/policy-ableism-and-discrimination-based-disability/2-what-disability.
- “Type 1 Diabetes.” DiabetesCanadaWebsite, http://www.diabetes.ca/about-diabetes/type-1.
- W, Zhang, et al. “The Relationship between Chronic Conditions and Absenteeism and Associated Costs in Canada.” Scandinavian Journal of Work, Environment & Health, Nordic Association of Occupational Safety and Health (NOROSH), 2016, http://www.sjweh.fi/show_abstract.php?abstract_id=3583.