I’m not taking credit for this letter, I did not write it, I found it online and sent it to everyone I know to help them understand what I was going through. I wish I knew who did write it, I would love to give them the credit here on my blog! (If anyone knows, please let me know and I’ll be more than happy to post the credit!)
A LETTER FROM FIBROMYALGIA
Dear Miserable Human Being,
Hi, my name is Fibromyalgia, and I’m an invisible chronic illness. I am now ‘velcroed’ to you for life. Others around you can’t see me or hear me, but YOUR body feels me. I can attack you anywhere and anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.
Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.) Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn’t ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those years of abuse and trauma. Well, anyway, I’m here to stay! I hear you’re going to see a doctor who can get rid of me. I’m ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you’ll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You’ll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!
Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease. Some of them will say things like “Oh, you’re just having a bad day”, or “Well, remember, you can’t expect to do the things you used to do 20 years ago,” not hearing that you said “20 DAYS ago”! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, especially when you are in the middle of a conversation with a ‘normal’ person, and can’t remember what you were going to say next!
In closing, you’ve probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People with Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.
Remember, I’m stuck to you like Velcro – and I expect we’ll be together for the rest of your life.
Have a nice day!! (ROFL),
10 best things about Fibromyalgia
(from Zazzle.com amazing website of super cool products)
I save money on magazines. With brain fog, I can’t remember what I just read!
I am a cheap date. No alcohol, no dessert and I still feel drunk or hungover.
On ‘good day’s I feel wonderful. Other people need a much better day to feel that way.
I am easy to find…I’m either at the Dr’s office or at home.
I never have to make my bed because I’ll probably be right back in it.
I have acquired a great lounging/sleeping wardbrobe. I rarely get dressed as nobody ever sees me.
Disequilibrium saves money on amusement parks. I get the same sensations every time I stand up!
I feel smarter than my Doctors…all they say is ‘I don’t know’
With short-term memory impairment I can hide my own Easter eggs and Christmas presents.
Before you Judge
This is not my own article but one I’ve gotten from FMS Community at
http://www.fmscommunity.org/lettertonormals.htm and felt it should be shared because it’s so true!
There are the things I would like you to understand before you judge me…
Please know that being sick doesn’t mean I’m not human. I may spend most of my day flat on my back and I might not seem like great company, but I’m still me stuck inside this body. I worry about school, work, family and friends and I’d still like to hear about yours.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable but it will pass. I’ve been sick for for so long that I can’t afford to be miserable all the time, in fact I work hard at not being miserable. So if I sound happy, it means that I’m happy, it does not mean that I am well. I may be in pain and 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 mean that I can stand ten minutes, or an hour. It’s likely 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, but with Fibromyalgia 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, and the next I’ll struggle to reach 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 worse. Fibromyalgia may cause secondary depression (wouldn’t you get depressed if you were no longer able to participate in life?) but it is not caused by depression. Telling me that I need exercise is not appreciated or 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, 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 every one of my friends has already suggested every theory known to man. I tried them all, but quickly realized I was using up so much energy trying new treatments I was making myself sicker, not better. If there was something that cured Fibromyalgia, all of us would know about it by now.
If you read this and still want to suggest a cure, submit it in writing but don’t expect me to rush out and try it. If it is something new, with merit, I’ll discuss it with my doctor.
Please understand that getting better can be a slow process. Fibromyalgia entails numerous symptoms and it can take a long time to sort them all out.
I depend on you – people who are not sick for many things but most importantly, I need you to understand me.
The above text may be printed freely, and shared as needed providing all content is kept intact. No other person shall ever publish this work citing themselves as the author and give credit to FMS Community and link back to the original site. Thank You.