Chronic Migraine, Coping, Society

The Underlying Issue of Invisible Illness

As part of National Invisible Chronic Illness Awareness Week last week, bloggers were encouraged to respond to 30 prompts about their illness. I started to respond and was quickly overwhelmed. The prompt “If I had to choose between an invisible illness or visible I would choose. . . .” has lodged itself in my mind and I’m pretty sure it will nag at me until I write about it.

Here’s the thing. Feeling like crap and not having anyone else aware of it stinks. Sometimes I want to scream, “Don’t you know I feel horrendous? Leave me alone!” However, I would not trade the possibility for anonymity that having an invisible illness affords. I like that disclosing my illness is my choice. It provides me an inkling of control and I don’t have to deal with people staring at me (except for when Hart has to practically carry me out of a movie or concert and I know people are marveling at how drunk I must be).

Honestly, the problem with migraine is not that no one can see it, but that few people believe it is a serious illness. I think this is the real crux of the issue. After all, cystic fibrosis, epilepsy, cancer and MS can all be invisible, but it seems rare that someone would doubt that people with these diseases endure genuine and significant hardship. Would people believe that migraine, fibromyalgia and myalgic encephalomyelitis (chronic fatigue syndrome) are disabling for some people if we were all in wheelchairs? If medical tests actually showed that something was “wrong”? Does a disease have to carry with it a risk of death or at least a dramatic physical event (like a seizure) for well people to take it seriously? What will it take for people to believe our suffering is real?

Maybe I’m missing something here — what do you think? Is invisibility really the issue or is the underlying problem that no one believes a disease they can’t see or test for?

3 thoughts on “The Underlying Issue of Invisible Illness”

  1. I think you have the right idea Kerrie. The problem lies in them not being able to test for it, and also that no one can really know how we are feeling except ourselves. I think this problem extends to all aspects of life for the sufferer.

    And on your point of enjoying the anonymity, I agree with that. I have 2 invisible illnesses, chronic migraine and fibro, but I love just being able to chat with people and be “normal” when I am up to it. That helps me keep a sense of normalcy, which is important when life is filled with pain, doctors visits, healthcare bills, etc. I can leave that world for awhile and laugh and joke and be my old self.

  2. Continued also have had several cat scans and MRI”S they found that I have pinched nerves c5 c6 and they all say doctor’s and specialists say that it is not linked to the migraines. I have a therapist I am on antidepressants and I write every day. I have a good support system for the most part. Accept for the fact that I can’t hold on to a job. I am always put down for the financial isuses by my common law husband that i don’t contribute. This causes varying amounts of stress. I am desperately looking forward to being able to attain a job working from home on the computer so I can earn a living for myself and my family and so i can feel worth while. I am looking for something I can get paid for not pay anyone. thanks for listening enjoy reading thank you

  3. My illness is chronic migraines and lots of people don’t understand that you can’t just take an advil and get over it. This includes doctor’s!
    This doctor refuses to see me cause he thinks I am a drug addict. I hate that and because of the exobarant cost of the migraine pain killers that work for me I go for samples and this doctor told me they had no samples and where I am from the aborginals get preference and free things all of the time and I over heard him giving her samples of RELPLAX. This was very offensive to myself.
    I would try to educate all of these medical practionares that we are not addicts, whining or drug addicts. I have been to see 5 different neurologists and we have exhausted all the preventative migraine medications as well as accupuncture, lazer, ultra sound ,physio massage electronic therapy several herbal therapies.

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