Chronic pain · Fibromyalgia

The mask of invisible illness

mask

I’ve been thinking a lot lately about the term ‘invisible illness’. ¬†During a hospital stay last year I had a discussion with a few other chronic pain patients about the benefits and drawbacks of living with a visible illness compared to an invisible one. ¬†Oh yeah, those hospital stays get crazy!

With a visible illness one lady explained, you can never get away from it. ¬†As soon as anyone sees you, they see your illness. ¬†You’re immediately pigeonholed as the ‘disabled person’. ¬†With an invisible illness on the other hand, you can choose who knows about your diagnoses.

While that’s true,¬†the reality of living with an invisible illness means people assume you are just like everybody else and can, therefore, do everything just like everybody else.¬† This means constantly having to explain why you can’t do something, why you get treated differently etc etc.

Every morning (okay, five mornings a week) my little companion and I go for a walk.¬† We often pass a¬†couple also walking their puppy,¬†the husband is a colleague of mine.¬† As I said good morning to them last week it dawned on me that, to the outside world, the couple and I look just the same.¬† We all get up around the same time, take our dog for a walk, go home for breakfast and then head to work.¬† The husband generally arrives at work before me and leaves after me but that could easily be explained by the fact that his position is senior to mine.¬† What nobody sees is the struggle it takes me to get out of bed each morning; that I’m not taking my dog for a walk, I’m walking because my knees and back demand it, it just so happens that I have a dog who also¬†benefits from this routine.¬† Nobody sees the exhaustion I face when I get home; the rest I have to take before, during and after I shower.¬† Nobody knows that I used to be an early to arrive, late to leave worker but that my body simply won’t allow me to be that way anymore.

My point is,¬†one of the reasons fibromyalgia is an invisible illness is because we try so hard to be healthy and do things just like everyone else that in doing so, we make our illness invisible.¬† When my fibro was at its worst it was visible to the whole world.¬† I couldn’t sit or stand up straight, my shoulders were¬†permanently hunched over, my head hung low.¬† My knees couldn’t bend so I shuffled along slower than a tortoise.¬† My immunologist described it best “You looked as though every part of you was in agony”.¬† Even now I might limp when my knees are having a particularly bad day, walk slower when I’m more tired than usual.¬† At times you will see me with a heat pad stuck on the back of my shirt, or tens machine wires sticking out of my top.¬† It’s on these days that other people can see my pain.¬† But it’s not only these days that I feel it.

If you can see my pain it’s because I’m in agony and no longer have the strength to hide it.¬† If you see me and don’t see my pain, it’s still there, it hasn’t gone away, I’m just managing it better.

I constantly struggle with not wanting to be known as the ‘sick girl’ but also not wanting to have to explain why I can’t do certain things.¬† Being the ‘sick girl’ gives you an out.¬† People might not know or understand the details, but they also don’t question when you turn down an invitation or say “that’s just too much for me right now”.¬† Looking healthy and turning down invitations brings questions.¬† Why do we find it so hard to accept another person’s right to say no?

10 thoughts on “The mask of invisible illness

  1. What you write here is so interesting and I can relate to all of it. The most frequent comment I get that’s even remotely related to my illness (I’m fibro too) is “you look tired”. I do look tired all the time, but in terms of what I do people only see a competent and able person. They don’t see the exhaustion at the end of the day. The inability to cook a meal (we rely on meals that go ping) or clean my home. The mental battle of deciding whether I can cope with a shower before or after work. The other that struck me, and please don’t see this negatively, is that we tend to assume other people are ok too. We don’t maybe judge in the same way when we know someone is sick compared to how ‘normals’ judge when they know we have fibro/ME/lupus etc. but maybe the guy had to inject himself with insulin before he left the house, or take two or three inhalers so he could walk his dog. I know what you’re saying and I agree more than 100% on that, but it also struck me that we don’t know anyone else’s situation either and maybe we’re in danger of not giving people the chance to empathise by locking away the truth of our illness because we assume that they won’t understand.

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    1. I know exactly what you mean. As a child, whenever I would get down about not being like the other kids my mum would say “everybody has something”. It’s so true. I hope that I’m understanding of differences because of my own but you’re right, I put on a brave face/don’t answer truthfully when people ask me how I am because I assume they don’t actually want to know/won’t understand. I could be shutting people out by doing that

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  2. Before my diagnosis, I had a doctor tell me that the symptoms I was experiencing was normal mom pains. I felt so weak after hearing from a medical professional that I basically couldn’t hack it as a mom and needed to buck up. In the following years I tried so hard to mask the pain. Each day I was smiling bright and being the best mom and wife I could be. On the inside I was hurting, screaming, in pain. I hated trying to be something I wasn’t. Now that I know that I’m not crazy and weak, I feel better. I do like picking and choosing who knows about my diagnosis, but, at the same time I sometimes wish others knew so I didn’t have to pretend.

    Very insightful article. Thank you for sharing at #ChronicFridayLinkup! I pinned your post to the Chronic Friday Linkup board at http://www.Pinterest.com/beingfibromom

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  3. It’s amazing how uneducated and condescending some doctors are. I had a psychologist (in a social setting) tell me it was a “made up decease”! And these are supposed to be the people we turn to for help. It’s responses like these that make me not want to tell people but, as you say, sometimes I also wish everyone knew so I didn’t have to pretend.

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