Published 28 November 2023
There are lots of hidden disabilities in our community. None of us ever want to assume we know what someone is going through, why they seem a bit off today or how we should approach them.
Fortunately, we don’t have to figure it out on our own. One of our community Julie, shared this piece with us from Bek Oberin on what it’s like to live with FMS and MPS.
Julie
"Having Fibromyalgia (FMS) and Myofascial Pain Syndrome (MPS) means that many aspects of life change.
Unlike the effects of cancer or accident injuries, the effects of FMS and MPS are invisible. Most people do not understand anything about FMS/MPS, and those of you who think you do, many are actually misinformed. In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me before you judge me.
I'm a human being first.
Please understand that being sick doesn’t mean I am not still a human being. I have to spend most of my day dealing with lots of pain and considerable exhaustion, and if you visit, I probably won’t seem like much fun to be with, but I am still me stuck inside this body. I still worry about school, work, family, and friends, and most of the time I’d like to hear you talk about your concerns to me too.
Happy & healthy are not the same.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable for a week or two, 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 are talking to me and I sound happy, it means I am happy. It doesn’t mean that I am not in a lot of pain, or extremely tired, or that I am getting better, or any of those things. Please don’t say “oh, you’re better!” I’m not sounding better, I’m sounding happy.
Every day is different.
Please understand that being able to stand up ten minutes doesn’t necessarily mean that I can stand up for twenty minutes or an hour. Just because I managed to stand for 30 minutes yesterday does not mean that I can do the same today. With a lot of diseases, you are either paralysed or you can move. With FMS/MPS the issue of being able to move becomes more confusing.
Please understand that the effects of FMS/MPS are variable. It’s quite possible that one day I may be able to walk to the park and back and the next day I will have trouble getting to my own kitchen. Please don’t attack me when I am ill by saying “but you did it before”. If you want me to do something, then ask me whether I can do it. For the same reason, I may need to cancel an invitation at the last minute. If this happens, please do not take it personally.
I know my body best.
Please understand that “getting out and doing things doing things” does not make me feel better and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join that gym, try these classes, and so forth, is not correct and may frustrate me to the point of reducing me to tears. If I was capable of these things, don’t you know that I would? I am working with my doctor and physical therapist, and I am already doing the exercises and diet that I have been recommended to.
Another statement that hurts lot is “you need to push yourself more, exercise harder.” Obviously, FMS/MPS are directly concerned with muscles, and because muscles don’t repair themselves the way your muscles do, this does far more damage then good. It could result in a single activity costing me days or weeks or months in recovery time. Also, be aware that although FMS/MPS may cause secondary depression. I mean, wouldn’t you get depressed if you were sore and exhausted for years on end?
Things can change in an instant and I have to respond.
Please understand that if I say I have to sit down or lie down/ take pills now, that I do have to do that immediately. It can’t be put off or forgotten just because I’m out for the day or whatever.
FMS/MPS does not forgive me if I don’t do what I need for my health. I pay the price in the quality of life. At times, that price may be very steep.
There is no current cure.
If you wish to suggest a cure to me, 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 almost every one of my friends has suggested a possible “cure” at some point. At first, I tried to tell them all, but I then realised 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 those of us with FMS or MPS, we would know about it.
This is not a drug company conspiracy. There is worldwide networking (both on and off internet) among people with FMS/MPS. We keep up with the medical literature. If something worked, we would know it. If after reading that, you still wish to suggest a cure, then please do it, however, do not expect me to rush out and try it. I will take what you said, discuss it with my doctor.
You can help by just being you.
In so many ways I depend on people who are not sick. I need you to visit me when I am sick to go out. Sometimes I may need your help to help me with shopping, cooking, or cleaning. I may need you to take me to the doctor or to the physical therapist. I need you on a different level too… you are my link to the outside world… if you don’t come and visit me, then I might not see you at all. And as much as it’s possible, I need you to understand me. I don’t need sympathy – Just understanding.
(This letter is based on an open letter that was written by Bek Oberin. It has been modified for FMS/MPS and adapted from “Living with FMS” from Paula Paynes website: http://www.tidalweb.com/fms/)