When you look up the word “disability” there’s some conflicting information.
The dictionary gives two definitions:
noun – a physical or mental condition that limits a person’s movements, senses, or activities.
noun – a disadvantage or handicap, especially one imposed or recognized by the law.
According to the ADA, disability is a legal term defined as “a person who has a physical or mental impairment that substantially limits one or more major life activity. This includes people who have a record of such an impairment, even if they do not currently have a disability. It also includes individuals who do not have a disability but are regarded as having a disability.”
When it comes to Social Security related disability: “to be considered disabled, individuals must have an impairment, either medical, psychological, or psychiatric in nature, that keeps them from being able to a substantial amount of work. In addition, a person’s impairment must have prevented the individual from doing a substantial amount of work for at least 12 months, or be expected to prevent work for at least 12 months.”
These four variations bring up an awful lot of questions.
Most people think of disabilities as a physical impairment and their understanding begins and ends with someone who relies on a wheelchair or mobility device. It also extends to those who are blind. My photo doesn’t instantly pop up in someone’s mind as what “disabled” looks like.
Personally, I think the first definition is the broadest way to describe a disability, but it doesn’t leave any room for true understanding.
So when you have a neurological disorder that isn’t visible to the public, how do you demonstrate and help people understand that you are disabled?
First, I think we have to step back and define what we mean by disabled.
For me, my migraines disable me because they substantially limit all aspects of my life from my career to my personal life to my social life. They limit my ability to care for myself and participate in life the way an able-bodied individual can.
Because I recognized that my migraines were interfering severely with work, I decided to apply for Social Security Disability last September.
In December, I was notified that I met the qualifications to be medically disabled and they were still processing the financial side of my application.
But being “medically disabled” came in an incredibly dehumanizing way.
In October, I received a letter stating I had 10 days to fill out a form that would help determine if my “impairment is severe enough to prevent gainful work” and I was required to fill out a form regarding my headaches.
No where in my initial application did I use the word “headache” because that has never been my diagnosis and for the umpteenth time, migraine is not a headache.
There were 10 questions:
- Please describe your headaches.. Where are they located… How long do your headaches last?
- How often do you have headaches? When was your last headache?
- When you have a headache, do you have other symptoms such as sensitivity to sound, light, etc?
- Can you tell when you are about to have a headache?
- Describe any changes you experience after a headache. How long does this last?
- Do you take anything to relieve your headaches? If so, what do you take? How long does it take your headache to go away if you use this?
- If you are taking prescription drugs for you headaches, does it help? Where is the prescription filled? When was your last refill?
- Have you required any Emergency Room or Emergency doctor office visits for your headaches within the past 6 months? If yes, when was this? Where were you treated?
- Has anyone diagnosed you or treated you for migraines? Is anyone treating you now for migraines?
- Describe any impact your headaches have on your daily life, routine, and your ability to work.
I remember being in shock. I’d spent hours upon hours compiling doctors records, dates, prescription information, hospital stays and medicine information to submit with my initial disability form. My initial information contained 7 Healthcare Professionals, 2 Hospital/Clinic stays, 5 medical tests, and 7 current medications. Within each healthcare professional’s section, every medication and treatment option tried were included as well.
But instead of looking at that, they gave me 10 days to describe my “headaches” and only asked one question regarding migraine.
The first 9 questions have no merit in my opinion. The final question, is the only explanation anyone should ever need when it comes to migraine and disability. And so seven months later, I wanted to present the same letter I submitted to them, to you.
10. Describe any impact your headaches have on your daily life, routine, and your ability to work.
My migraines have had a severe impact on my day to day life and my ability to be the person I want to be at work and at school. To start with my day to day life, my migraines began to interfere when I was in high school. As a Junior, I began having to leave school early or go in late because of my headaches. By Senior year, I was missing multiple days of school each month and struggled to stay on track with my course work. At the end of Senior year, my first long-lasting migraine started. This interfered tremendously with my job at the time where I was waitressing. Not being able to get my shift covered, I was forced to leave that job. I missed most of my freshman orientation for Clemson University, and ended up in the hospital a week later due to complications with a new migraine medication.
As I started my life as a college student, I found I was unable to participate in the social activities with my friends, as they made my migraines much worse. I had to put in double the effort when it came to my courses, as most days I was fighting through pain or medication side effects. This was the first year I had to ask for accommodations in relation to my migraines. I failed a calculus exam because I didn’t have said accommodations in place, so I wasn’t allowed to reschedule. I ended up taking the exam upside down, with the problems blending together on the page. By my second semester, I had accommodations in place and was constantly forced to use them. I often would request I present first in my architecture studio, knowing within half an hour I wouldn’t be able to speak or even stand up straight. After transferring to a smaller school, I sought out accommodations as well. I was granted the ability to miss class without penalty and could work from home if deemed necessary. This system worked well for the first semester, but by the second semester, I could no longer attend classes more than once a week and rescheduled exam after exam. By the end of the semester, although my GPA didn’t reflect how often I wasn’t at school, I recognized that I wasn’t able to be the attentive and passionate student I wanted to be. After looking to spend the summer finding a better way to manage my migraines and being extremely unsuccessful, I chose to medically withdraw from my university a few days prior to the start of the fall semester.
Regarding my ability to work, my migraines present many challenges. In my previous job, where I was a design consultant at Arhaus, I spent a large portion of my time focusing on communicating with my supervisor and trying to find reasonable accommodations that would allow me to do my job while also suffering from migraines. I was able to have a flexible schedule, but I still was required to work a certain number of hours and be attentive while doing so. After determining I needed fewer hours, this accommodation was made to allow me to reduce my hours dramatically and come in if I felt up to it on my days off. The energy that being at work, whether I was standing or sitting, required of me, resulted in spending my days off in bed, unable to function on the most basic level of showering or cooking meals. So, this accommodation, proved to also not be enough and I was forced to stop working all together.
There are many components of working that prove to be impossible while battling a migraine. Workplace settings such as offices and places of retail – like Arhaus – are full of light. Whether it is overhead fluorescent bulbs, or natural light pouring through the windows, these lights make working through a migraine impractical. The ability to communicate is also a huge part of being successful in a job. My aphasia can make the simplest communication nearly impossible. Other symptoms, and the constant need to rest, make it impossible to be consistent in my work. Jobs require that you can work for a certain number of hours without breaks. Working requires you to be reliable, and with the lack of predictability of my migraines, I cannot be a reliable employee.
Finally, migraines have completely altered the way I have to approach life and the routines within it. Something as simple as cleaning a bathroom can drain me of my energy, but also requires much more because of my migraines. I have to purchase special cleaning products that don’t contain bleach or harmful chemicals as those can trigger painful attacks. If I want to clean one day, that will be the only activity I can sustain throughout the day, as it uses all of my energy. That is how every day is, I have to decide if I’m feeling good enough to even complete one task, and what that one task may be. Cooking and grocery shopping are another aspect of my life that has completely changed. I no longer can physically go grocery shopping. I am reliant on delivery services and the kindness of others when it comes to getting food. Meals cannot be cooked whenever it’s time to eat, they have to be prepared in advance, as I often don’t have the energy to even cook for myself. Even the clothes I own are different. Due to the constant pain, I have accumulated a closet full of soft and comfortable clothes to allow me to have some comfort during a bad attack.
My routines don’t involve friends and family and regular activities, as events like going out to dinner, going to see a movie, or attending a concert are not activities my condition allows me to participate in. I lack any remnants of a social life, and spend my days rotating between lying in bed and sitting on the couch. The routines that exist in my life revolve around doctor’s appointments, therapy appointments, and self-care, as working to find a way to manage my migraines, is the only relevant aspect of my life. Last weekend was my birthday, and what should have been a time of celebration turned into more disappointment. Each event I had planned had to be cancelled, including a relaxing brunch downtown. On my actual birthday, I spent my energy for the day on the Air Force Base getting a new identification card for insurance purposes so I could go to the doctors appointment I had the following day. I did not celebrate my birthday this year. This social aspect is often the hardest aspect of migraines to accept.
A disability isn’t just something that offers a financial supplement because one cannot work.
Each month I can count on both hands how many times I leave my house, less than half of those are outings where I was able to drive myself to the doctor appointment I was heading to.
I get caught in the ideas of what “disabled” is supposed to look like, but those ideas live within those of you who aren’t disabled.
It is foolish how often people question an individual with a disabled placard who isn’t using a mobility device.
It amazes me when friends and acquaintances ask what I do with all my time. They ignore that I spend 3 – 4 hours each morning preparing for the day and “warming up” then don’t understand that I’ve only got 5 hours (and that’s on a rare really good day) where I can be productive. They also don’t understand that working on a computer or participating in advocacy conversations, or doing migraine related research can be done on lower productivity levels but don’t equate to substantial activity that could be replaced with a job.
People still question how I look and believe that one good day where I could drive to Starbucks, walk inside, and then drive home means I must in fact be better.
My point is that Migraine is a legitimate disability and I’m tired of feeling less than welcome in places managed by more visibly disabled people. I’m tired of being told to monitor how I use the word disabled. I’m angered that I feel like I constantly have to “prove” that I am disabled or that I shouldn’t be using my voice to make a change.
To me, that is all the more reason for me to keep talking. To keep reminding people that disabilities are not always visible. To use the word disabled when it makes able-bodied people uncomfortable.
My existence shouldn’t make you uncomfortable.
My disability stems from a chronic illness and although I am determined to be the healthiest and best version of myself and one day break free from the barriers my migraine imposes, the illness is still chronic and breaking free and remaining in remission isn’t a one and done thing. It will be a lifelong strategy that will most likely have to be altered numerous times.
Chronic Illnesses are different as we often have hope for remission. Disability is a diverse umbrella term that includes people just like me to people who spend their who lives using mobility aids. But contrary to popular belief, those with mobility aids are not confined to their chair. Their chair gives them the freedom our world often denies them.
I am no less of a person because of migraine. The world is less of a place I want to exist in because the able-bodied people who designed the structure for our society have made it exclude me and other disabled individuals.
I am not limited by my migraines. My writing and my passion demonstrate this. I am limited by the society around me that refuses to present opportunities that allow me to support myself and refuses to create spaces where I can be comfortable and have access to.
Disability is diverse. I am diverse. This community is diverse.
Your opinions and beliefs that you don’t want to alter, are not diverse, and you should probably start working on that.
Activism. Liberalism. Whatever the hell you want to call it -ism. Cannot and should not exist without considering the vast, forgotten and ignored disabled population.
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