By Liza –
Life would be so much easier for those of us in the chronic pain community if our invisible illness showed up like a thought bubble over the top of our head. You would be heading into work, driving on the freeway and you could see to the left of you, a gentleman in a Camry, has a thought bubble that says “Tinnitus.” A Nissan to the right of you with two ladies carpooling, and one has “Chronic Fatigue Syndrome” and the other, “Irritable Bowel Syndrome.” As you look behind you, the young girl driving a cute little Beetle, has “Rheumatoid Arthritis” and as you are realizing you are not alone, a thought bubble pops up over your head that says “Chronic Migraine.”
I thought about this pretty hard. I was trying to think of any draw backs this might have but, if we were a community where this was simply a known factor about everyone then there wouldn’t be a need for people to live with invisible illness, the way they do now. This brings me to the topic at hand over how chronic migraine is an invisible illness, which is truly surprising to me when there are 37 million people suffering with migraine in the U.S. alone. But as you can see in my anecdote, many chronic illnesses are not physically discernable, including migraine.
“But you don’t look sick.” I am sure that every spoonie that ever was has gotten this statement from those who don’t understand chronic illness. We are programmed (genetically predisposed), as humans, to be able to identify people who are ill so that we can stay away from them.
This isn’t because our pre-historic ancestors were callous, it was to ensure survival because a simple cold could kill you back in those times. So, to ensure the survival of our species we picked up on certain clues that would alert us that someone was not feeling well and we could avoid them. But invisible illness doesn’t work like that, so humans have a difficult time reconciling that someone who appears fine is actually struggling with a sometimes, crippling illness.
It’s Not Really Invisible
The people I’ve seen on a regular basis, be it co-workers when I was working or my family and friends, have always known when I get a migraine. The symptoms of a migraine, for me, are not so subtle.
The day before a migraine hits I feel odd. It’s nothing you can really point a finger to, more like sluggish, tired, and my head feels stuffy. Sort of like pressure in my sinuses. The moment it hits I feel nauseous and dizzy and being any sort of vertical makes me want to be sick. I get dark circles, thinking hurts and it really feels like someone is trying to dig a tunnel through my eye socket. A migraine is not just a headache. It’s a whole-body assault and it’s very much the neurological disorder it falls under.
I’ve had generic headaches–sometimes really painful ones–and I have had hang over headaches, but this doesn’t come close. A reason I think it is invisible is because those who suffer from chronic migraine (without another physical disability) lack a cane or wheelchair, which seems to be the universal sign for disability. But let me squash that idea right now because having a disability can mean many different things and even those of us who use mobility aids, may not use them all the time and it does not make us any less disabled.
However, many of us who have this debilitating illness plow through our lives without missing a beat until we are struck down with a migraine. Because of this, most people, unless they know us well, may not have a clue we are battling this war; let us not forget, we are also individuals and because of this our symptoms are not identical.
In a broad sense we will experience similar things but maybe someone else with have worse nausea or someone might have dizziness and another may be so fatigued they cannot get out of bed. We need to honor all these representations of migraine and not determine who is worse than another because of the way it manifests in different people.
I dream of a day when migraine will be understood and when there will be a treatment that will abolish it completely. I believe that day will come. In the meantime, we need to speak up about invisible illnesses like migraine, RA, Lupus, IBS, Fibromyalgia, Migraine, and many others. These are only naming a few out there; every voice matters in spreading the word about these debilitating illnesses so that those who suffer from them won’t feel invisible.