i have been writing this blog for just over a month now and, first of all, thank you! this blog has helped me through some very tough times. i had no idea that doing this would help as much as it has. 99% of my writing is done in the middle of the night when most sane people are sleeping. consider that i have insomnia during a flare up, i spend a lot of time reading and writing when i can’t sleep (in between facebook games, of course!).
through one of the blogs that i follow, i ran across this letter that i just love. it says it all. it’s a bit blunt, but it’s right on point… most important, i feel this way… except i am open to suggestions.
thanks to my newfound blogger/ twitter friend Sassy Nurse for sharing this with us:
Letter to people that don’t have Fibromyalgia (FMS) and/ or MPS (Myofascial Pain Syndrome): By Billie Chainey
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 in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about 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. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy.
Please understand that being able to stand up for ten minutes, doesn’t necessarily mean that I can stand up for twenty minutes, or an hour.
And, just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. 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”, “walking”, “thinking”, “being sociable” and so on … it applies to everything.
That’s what FMS/ MPS does to you. Please understand that FMS/ MPS is 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 then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
Please understand that “getting out and 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 this gym, try these classes, take this pill/ supplement… may frustrate me to tears, and is not correct… if I was capable of doing these things, don’t you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do.
Another statement that hurts is, “You just need to push yourself more, exercise harder…”
Obviously FMS /MPS deals directly with muscles, and because our muscles don’t repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS/ MPS may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!) but it is not created by depression.
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 out for the day (or whatever). FMS/ MPS does not forgive.
If you want 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 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 were something that cured, or even helped, all people with FMS/ MPS 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 FMS/ MPS, and if something worked we would KNOW.
If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I’ll take what you said and discuss it with my doctor.
In many ways I depend on you… people who are not sick…
I need you to visit me when I am too sick to go out…
Sometimes I need you help me with the 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’re my link to the outside world…
If you don’t come to visit me then I might not get to see you…
And, as much as it’s possible, I need you to understand me…
I would also like to add a personal note to this that isn’t listed above that would be a tremendous help emotionally.
Please don’t make my disease about you… .or say things that make me feel like I let you down. Things like, “Oh, I was hoping you were better today.” make me feel guilty and that I have somehow disappointed you. I understand this disease effects everyone involved, but the last thing we, as the sick ones, want is to burden anyone. We have plenty of guilt for being so dependent on others as it is, we don’t want to feel like we’re disappointing you or making you feel bad by saying that we don’t feel good. We don’t expect you to say anything about us feeling bad as a matter of fact. Just be there… hold us when we need to cry from the pain or frustration of being so limited. We know you care… otherwise you wouldn’t come around or even ask how we’re doing, but please don’t make us responsible for your emotions too. When the bad days hit… we’re doing our best to deal with our own.
If you must say something it’s ok to say you’re sorry for what we go through.. but please don’t make us feel like we’ve killed your hope. You are our source of encouragement.
Wonderful letter, it brought tears to my eyes, as it could have been me writing it. I would love to share this with a few people in my life. Fibro can be so lonely because people just don’t understand. Unless you constantly bring it up to remind them, and we don’t want to do that because we then sound like complainers.
dogkisses – I agree with you, without my precious little dog I don’t know where I’d be. He loves me and cuddles me when I’m down, with UNCONDITIONAL love. How great is that. Thank you Lord for our precious furbabies!
Thank you. I am ready this at 4:30am because I have once again been up all night. Reading this brought tears to my eyes though my close family has tried hard to understand. I was just in a bad fight with my best friend, over my use of medication. I don’t know what to say to people. I am 22, behind on college and barely functioning. I have felt this way for a long time; people don’t have to completely understand but to judge me for what I feel I need to do for my benefit is wrong. Thanks again this makes me feel like I am not crazy, or lazy; which is what so many people think of me.
Hi myfoggybrain! Having a cup of coffee I decided to read. So glad I read this letter. It is the best one I’ve read, expecially about feeling guilty. I do not get company. Everyone is waiting until I can visit them, which is a long distance away. They keep saying well, we hope you are well by then, (then meaning a particular time they want me to come, such as for the Christmas gathering).
I love my family but I feel guilty most of my life. I hate the feeling. I wish someone would come and help me do chores. I would love to have a visitor. Recently my sis said that since I am relatively young then people aren’t going to visit me when I’m sick because they expect me to get better, adding that I am not on my last leg or 80 years old like folks in a rest home who gets visitors.
I’m going to print this letter though I may be the only one who reads it. I’m happy today to have my dogs. They love me so much. They get closer when I get sicker. How awesome are dogs!
I don’t believe guilt makes anyone feel better or does anyone good… so maybe you can take that feeling and chuck it out the window (probably while you are driving far away from your home so it doesn’t remain on your property is best!). I had/ have a difficult time with this part of fms, but acceptance that there really is nothing I can do about it really does help. What can we do? Laying the guilt on top of the pain only means more pain.
Let’s you and I and any others who feel this way make a pact to cut this crap out. Seriously the pain is bad enough!! Guilt is a self inflicted choice. When we decide to, when WE make the CHOICE to feel guilty we should pinch ourselves or something that reminds ourselves that we are choosing to create more pain for ourselves.
Yummmmmm, coffee sounds really good.
Oh by the way, printing the letter is a good idea… while you are at it… copy it and send it to your family members that don’t understand yet… :)
Have a wonderful day! stay cool and here’s a hug…
Hi mfb411. On Guilt. I will try the pinching thing. I actually think that guilt is a disorder of sorts that has me. I feel it so often, so deeply, even in the smallest things such as eating! Not that I want to lose weight, in fact I want to gain weight, but often too guilty to eat. So, mfb, is it always a choice or do you think it is possible that a child can learn guilt so well that it becomes part of her personality? That is how it feels to me but I’ll pinch myself today. I am limiting it to no more than five pinches per day :). Also, I think my family would think I’m nuts for sending them a letter.
Thanks 4 the hug and here’s one 4 U 2!
I’ve been through a different kind of pain, but this is at another level. Thanks for sharing and helping me better understand. And let me know if I can ever help in any way, no matter how small.
What a powerful letter – it says it all! I wrote my own letter to normals awhile ago but this one is so honest and straighforward. I am really dealing with guilt lately (especially related to my husband) – and the last point really resonated with me. I am going to print it off now. Thanks for posting it!
I’ve just started blogging, and my focus is on chronic pain — trying to put a postive spin on what can be a very negative experience. Thanks for positing the letter — you can subsitute other types of chronic pain, and creat the same message — pain hurts! and it can appear to be an invisible illness!
Good luck going forward!
A chronic pain surviror
Great information. Now our problem is how to get skeptics to read it.