Since I hit puberty I have been overcome with pain about once or twice a week. I’ll lose my eyesight, all comprehension of space and time, and I’ll throw up for hours at a time, sometimes throwing up blood. Simply closing my eyes will be too difficult a task for me because moving the muscles is too painful. Sometimes I’ll suffer like this for days at a time, with no way of knowing when it will end.
The long term effects of living like this have been difficult to handle. There are times, when I’ll be two or three days deep into the pain, when I’ll realise how mentally weak I’ve become and I lose all memory of what it was like to feel normal.
Despite the fact I have no idea when this will happen to me, how long it will last, that there is no way for me to make the pain go away and no doctor knows why it happens, I still struggle to make people take it seriously, because my illness isn’t visible. I suffer from chronic migraines, which unfortunately not many people seem to acknowledge as a proper illness.
I’ve come to learn over the decade that I’ve suffered through this horror, that people only respect illnesses they can see, or know, without any doubt, are serious (usually through media coverage). Broken bones, diabetes, stitches, epilepsy, hell, even the common cold gets more acknowledged than my migraines.
I’m not saying those illnesses, and others, aren’t serious. There is nothing funny about anybody’s suffering. But I wish I didn’t have to spend my whole life convincing people a migraine isn’t your average headache.
The problem is, most people haven’t suffered from a migraine. Those who have immediately empathise with you, especially if they’ve had more than one. Others will say “Oh I think I had one once” – trust me, if you’d had one, you’d remember it. Anyone who hasn’t thinks you’re just exaggerating, complaining, being a standard hypochondriac and secretly thinks you should just take some Panadol and get on with things. No one would ever tell someone having an asthma attack just to "go outside for some fresh air" and stop complainging.
There have been some unexpected benefits to migraines. Being bedridden twice a week has forced me to work twice as hard as most to be noticed, to get the marks required to pass classes, to be recognised at work, to get internships, to get homework and study done. There was a 12 month period where I took a huge risk in order to take a big career step and worked two jobs while studying full time.
Whenever I got a migraine I’d hear the words “You’re over working yourself” or “You’re stretching yourself too thin” – a sure fire way to unleash my Summer Roberts-like rage black outs. What people don’t understand is, funnily enough, I know my body. Whether I’m at home on the couch or out running a marathon (this is just an example, I’ve never run a marathon), I’m going to get the migraines either way. I made the decision to work as hard as I could, as crazy as it was, because what choice did I have? The migraines were showing no signs of stopping. So even though I’d spend days in bed writhing in pain, unable to see, think or eat, and come out of it as exhausted as I'm sure people who actually run marathons get, I’d still get up and go to school. And then I’d go to work. And then I’d do it all over again.
Work and education authorities made this process hell, I don’t mind telling you. They are not open to accepting migraines as a permanent, diagnosable illness. They made it endlessly difficult for me to meet their requirements.
I once had a workplace ask me to get a letter from my neurologist, explaining how the migraines left me incapacitated and sightless, and under doctor’s orders I was not allowed to leave bed. That wasn’t a problem, I got the letter. $400 later, I was told by the employers I would still have to call in sick for myself, no one could call on my behalf – never mind the migraine made putting a phone to one’s ear similar to hitting one over the head with an anvil. Fine, I said, I’ll call. Then came the kicker, when they said I’d have to get a doctor’s certificate for each occasion. Impossible, I said, that’s what the neurologist letter was for. I’m physically incapable of going to the doctor when the migraines hit. They very politely began finding ways to fire me without actually breaking any discrimination laws.
This is what every job, or serious commitment, has been like for me. Because quite frankly, they think I’m lying. School was exactly the same. Every missed class or exam was an argument, a struggle to be believed, to be taken seriously. But don't worry, the kids who skipped to get drunk were sweet with their letters saying they were absent because of ‘medical reasons’. The letters didn't come with the subtle eye-roll from an all too unconvinced GP, so teachers were happy to accept them.
Now, I want to clarify, I understand I’m lucky. I imagine, without wanting to speak on their behalf, anyone who has to wear their illness on their sleeve for everyone to see most likely resents it. I do not introduce myself all, “Hi, I’m Mary, I suffer from chronic migraines, please ask me a hundred questions about it,” and I understand those with visible illnesses face this confrontation daily. I don’t tell people lightly. Even then, I play it down. I don’t want questions or pity. So I am lucky there.
I recently told a couple of people in my new workplace, in the venture for advice. You see, given my previous experience with office culture, I haven’t yet told my boss about the migraines. This has led to me working through the pain on a number of occasions for fear of having to lamely explain my situation over the phone at 2am (apparently I'm a masochist, because I chose a career which works around a 24 hours news cycle). So instead I drug myself up beyond legal driving limits, drive to work, and numbly work through my day silently pretending I’m okay. Man, do I know how to party.
My colleagues had no idea, which at least means my ploy has been working. But this is the life my fear of having to justify my pain to people has led me to. In the spirit of fresh starts I've established one New Year's resolution for myself this year. This is a break from tradition for me because I've always refused to promise myself I'll stop making all-too-frequent visits to the McDonald's drive-thru without any real intention for follow through before now. But this year I've made the decision to tell my new boss about my illness, and be taken seriously. When trying to explain the illness to someone I tend to fall into a rant of over-explaining and over-compensating in the attempt to make them understand (see above) but this time I'm going in with a plan of attack. Approaching the problem as though it were a plot hole someone thought they had found in the Harry Potter novels and had presented to me. I'm confident in my knowledge of the topic at hand and to be concise I must explain it to them without dribbling off a bunch of unnecessary facts and details.
Now I just have to hope I don't get a migraine on the morning I work up the guts to do it.