Things nobody tells you about having an invisible disability

This is the first installment of the series “Things Nobody Tells You about Having an Invisible Disability.”

When I was 16, I woke up with a migraine. It wasn’t unusual for me to get migraines at least once or twice a month, but for some reason, this migraine wasn’t going away. By day four of the same headache, my mother took me to the emergency room. They gave me medication, and it helped. But two days later, I was back in the ER for a migraine again. The ER recommended I see a neurologist who specialized in migraines, as the neurologist I went to didn’t. And that started my 6 year long descent into chronic migraines where I’ve been through almost every headache treatment imaginable, but with no hope of being cured, unless one day I wake up and suddenly feel better.

Granted, these are just my experiences, and are no way indicative of how other people with invisible disabilities or even chronic migraines live their lives.

1. You Have to Rely on Others

I’m almost done with college and I’m trying to plan what I am going to do next. I have a loving and supportive significant other who insists that he is going to support me until I can go to graduate school and be funded. That was the goal this year, but it hasn’t worked out that way. The reason why he is planning on supporting me is because this past winter break, I was fired from a chain department store for missing a day and a half of work due to my migraines. I am not cut out for hourly work and consecutive 8 hour days. I need schedules that are flexible and willing to adjust to my erratic body schedule. He understands that in a capitalist society, that just isn’t likely to happen and he expects to support me. This is the last thing I want, as a person who identifies as a feminist and just wants to be independent.

Now that we are aging out of our parents’ houses, he is going to be taking me to my Botox appointments and staying with me at the hospital. I worry, “Will he resent me because he has to take me to all of these appointments month after month?” Or, “Do I want him to see me when my headaches get so bad I can’t take a shower by myself?” He tells me not to worry, but it’s hard. And you wind up feeling like you don’t deserve someone who loves you so much because you feel like you can never return the love and care they give to you.

2. You’re Always Wondering “Am I Going To Get Stranded Here?”

When I first moved into my off campus apartment at West Chester University, I had no method of transportation to get to the grocery store. So, my partner and I decided to walk. We walked the two miles to the closest Giant and did our food shopping, but by the time we were finished, I had a migraine. I wouldn’t be able to walk the two miles back, especially carrying groceries. We called a cab, only to have the cab answering service ask, “Well, why do you even need a cab for such a short distance?” I, firstly, didn’t think that it was any of their business, especially if I was going to be paying them for transportation. Secondly, it suddenly struck me that maybe they wouldn’t send a cab if they thought my reason wasn’t good enough, or the distance was too short. They did agree to send a cab, but my partner and I had to wait an hour for it to arrive. We sat outside the Giant, with our groceries, thinking about what we were going to do from then on. From then on, the every few weeks my parents came down to take me to my doctor’s appointments, I asked them to take me to the grocery store.

I don’t walk most places out of fear that I’m going to get there and then not be able to get back. I don’t walk into downtown West Chester, I get rides or I simply don’t go at all. If I really need something, it can wait until I go to the grocery store and my partner takes me. I simply cannot afford to be stranded in public on a bench. When I have a migraine it is my most vulnerable and weakest state, and its never occurred to me until now that someone could try to take advantage of that. My primary concern is not being able to take my medication for hours. If my headache goes untreated too long, it turns into an emergency room migraine. If I can’t walk to the bathroom, I can’t inject myself. If I can’t walk to a water fountain or store, I can’t take pills. I’m stranded on that bench or sidewalk until someone comes to get me. But as far as anyone else knows, you’re just some weirdo crying on a park bench.

3. Your Family Isn’t Always Understanding and Eventually You Get Why

When my headaches first started happening, my parents did everything in their power to be accommodating. They would let me sleep from the time I got home from school until the next morning when I had to get up. They took my down to my doctor’s in Philadelphia, which was an hour and a half trek at least once a month. But as time wore on and I wasn’t getting better, they, along with my sisters, gradually grew more frustrated with my predicament and their own. “Why do you have to take naps when you get home from school every day?’ My mother would ask me. She eventually just started running the vacuum cleaner around me, ignoring the fact that I was trying to sleep— after all, her life wasn’t going to stop because mine had to.

When I got fired from my winter break job at the local Macy’s knock-off because of my headaches, my parents expressed their disappointment. “You can’t keep doing this,” they told me. “You need to power through your migraines. Your grandmother did.” My sisters would say (before I got fired and even before I got any job), “Employers won’t be as understanding as we are.” One of my sisters complained that she was never able to wear perfume around me, my headaches were really becoming a burden to the family and her lifestyle.

My sisters also felt neglected by my parents because of how much time they spent with me in the hospital. I was hospitalized for 5 days overnight for a headache treatment in Philadelphia, and my mother spent all 5 days in my hospital room, by my bedside. I was hardly awake for any of it, so she really could have done whatever she wanted. My sisters felt as though my mother wouldn’t do that for them, that it was special treatment. They weren’t necessarily wrong, neither of them had ever been hospitalized for five days in a row.

But after lots of fighting and growing resentment ended, it hit me. They weren’t mad at me. My family was frustrated at how after 16 years of my being “fine” and “healthy”, they suddenly had to adjust everything around me. And sure at first, that seems selfish, but my migraines impacted so many little aspects of life that people don’t even think about and take for granted. Like my sister, wanting to wear perfume or even applying scented lotions. After 18 years of her life, she suddenly had to stop doing that one day for fear that it would trigger an attack. Or my mother, having to change out all kinds of her usual cleaning soaps and detergents to ones that were less effective because they didn’t smell, and her having to clean more often because of it. Or us having to plan out what kind of restaurant we could eat at; did it have a smoking section? Yes? Then we can’t go there, even if it used to be one of our favorites. My mother used to get teary-eyed after some of my appointments at the Headache Clinic in Philadelphia. “I just wish things could be normal again for you.” And at first, that would hurt my feelings, but as time wore on, I did too. Sometimes I wonder if its easier for me to live with my headaches than to watch someone go through it and not be able to do anything about it— except to change every habit you’ve ever had and that STILL not help.

Despite the fights that ensued from my headaches and migraines and the extensive treatments and the worries, I’ve learned to stop blaming my family and friends for their reactions to my body. Anyone who firstly, hasn’t had a migraine (even at least once), and secondly, hasn’t had a chronic pain disorder can’t be expected to understand the pain, the fatigue, the down right mental exhaustion. The family and friends who haven’t left me during this 6 year journey are the ones I know I can really count on when the going gets toughest. And for that I am grateful.

However, it doesn’t make my place in society as a disabled person any less difficult or easier to navigate, especially when the world isn’t built for people with visible disabilities. In the meantime, I and others like me, have to struggle against simple everyday things like stairs and parking lots, which is near impossible when you need to take a nap after getting out of bed.