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Letter to Normal

These are the things that I would like you to understand about me before you judge me …

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day flat on my back in bed, and I might not seem like great company, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy.” When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker than ever. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for five minutes doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover. Imagine an athlete after a race. They couldn’t repeat that feat right away either. With a lot of diseases you’re either paralyzed or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting, “sitting up,” “walking,” “thinking,” “being sociable” and so on … it applies to everything. That’s what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It’s quite possible (for me it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying, “But you did it before!” If you want me to do something, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute. If this happens, please don’t take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. Fibromyalgia may cause secondary depression (wouldn’t you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct — if I could do it, I would.

Please understand that if I say I have to sit down / lie down / take these pills now, that I do have to do it right now — it can’t be put off or forgotten just because I’m doing something. Fibromyalgia does not forgive.

Please understand that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with Fibro then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Fibro. If something worked, we would KNOW.

If after reading that you still want to suggest a cure, then do it, preferably in writing, but don’t expect me to rush out and try it. If I haven’t had it suggested before, I’ll take what you said and discuss it with my doctor.

Please understand that getting better from an illness like this can be very slow. People with Fibro have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.

I depend on you — people who are not sick — for many things.

But most importantly, I need you to understand me. 

5 likes, 6 replies

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6 Replies

  • Posted

    Thankyou Christine; sums ALL up beautifully.....Bron
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  • Posted

    Hi Christine

    So true......That's how we all feel ?

    Thanks for sharing winkx

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  • Posted

    Thank you Christine for sharing this.


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  • Posted

    Thank you Christine, so beautifully worded and thought out, all so true for myself and I imagine for others.


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  • Posted

    Oh Christine, your post had brought me to tears.  Compared to others with this terrible unfair affliction, I'm in early stages.  I suffer all the symptoms anyone has mentioned but there are still days when I can live an almost 'normal' life. To the outside world I appear 'normal'.  There are times however when it hits and your words above hit the mark.  I have to accept it and rest, take a pill, whatever is needed, just to function.  To those around me I'm 'giving in to it'.  I'm not. As you've said - we have no choice but to manage the illness and we have to do what we as an individual need to do to get through it.  You're so right, it takes energy to deal with this and what we don't have is energy.  If I'm having to use every last ounce of my resources just to remain sane in bad moments, I have none to spare to 'cheer up' or even smile sometimes. Thank you Christine - I would be lost without the understanding on here of other sufferers. xxx
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  • Posted

    Well put together Chistine I fully understand this fully with you. I have my next session with pain rehab tomorrow alongside bring a physio back on board as have had a number of falls recently the last one being a Sunday week out in the garden after pushed my body to the limit push mowing both my front and back lawn and lost my balance whilst cutting the weeds mower does not touch with hand shears and the problem with this illness is once you are down there is no easy way to bounce back up and it always happens when I am home alone. Every day gets more of a battle for me day in and day out I get unaccepted for jobs I apply for and heaven help the jobcentre when I go into sign on this Wednesday with all these knock backs gives me no hope of replacing the job for which my contract failed to be renewed. I will be giving the Advisor a piece of my mind as I have mentioned previously for me to sit down at all during the day just cripples me and because I am an open and honest person with all my disabilities on my CV the trust of it is that there is also no Equality with this chronic illness of Fibro plus chronic coccygodynia no one will give me a chance. Exhausts me just trying and I have two sons to finance. Good on you Christine I am up there with you.

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