I just want to personally thank each and every one of you for helping me with all of my un-ending symptom questions for the last couple of months. I was actually diagnosed with fibromyalgia....I'm still being tested for other things but this is the only thing they could come up with. I recently joined the fibo community and came across this letter to friends and family. It's a good template if you were looking of a way to tell your friends and family about your illness, feel free to change things where's its appropriate. I hope it helps...god bless.


A Letter To My Family And Friends:
Understanding Fibromyalgia (FM) And Me.

Fibromyalgia is a silent and isolating disease. Fibromyalgia comes in different forms and different levels for each person. Fibromyalgia is very individualized with each person. We all dont suffer from the same symptoms all the time or even to the same degree. Some FM suffers are able to manage with exercise, meds, and a healthy lifestyle. There are still others who cant even get out of bed for more than thirty minutes without over working their bodies. In the end, we all are seeking understanding, patience, and love from the people we love and care about. This letter is to help you better understand me so we can make our relationship(s) the best it can be within this disease.

Unlike many other illnesses or diseases, FM is virtually undetectable to the naked eye. It isnt like looking at a cancer patient who has just gone through chemo. It isnt like looking at a person after having a horrific car accident. On the outside, I look normal but no one can see the pain within me. So before you try to judge me, first try understanding me. It doesnt matter whether I like it or not, but FM is now apart of me. FM has changed every aspect of my life not only physically but also mentally, emotionally and spiritually. I am just not the same person I used to be.

In the end, I am just like everyone else. I worry about work, school, family, friends, dreams, and how things will be. And since FM is such a day to day, minute to minute kind of disease, I dont honestly know what kind of shape I will be in, in the future. But I want you to know that I will keep fighting. I will keep trying and researching new ways to help manage my FM, so I can be the best person I can be for you, for me, and for everyone around me.

If you come to visit me or talk to me on the phone and I sound exhausted or in pain just know it is nothing personal. I have to deal with this on a minute to minute basis everyday. There are times it really can get to me. I know that it may seem like I am not much fun to be around anymore but it is hard for me not being able to do the things I wished I could do and used to be able to do. However, I am still the same person inside. So please understand, I am coping the best way I know how. Also if I sound happy on the phone doesnt necessarily mean I am not in pain or exhausted. I am trying to make an effort not to alienate the people around me just because of the moods the pain puts me in.

Please also understand that if I am able to stand up for 30 minutes today doesnt mean a few hours from now I will be able to do the same thing. Everyday is so different from the next and it can be so frustrating I know especially for me. I do my best to stay as active as I can. Whether I just walk slow or with a cane or I have to rest every five steps, I am still doing all I can do. I push myself even when I shouldnt because I dont want this disease to control me. This disease robs me of the joy of everyday living and spending time with you.

If you see that I am in pain or exhausted, and you know it is better for me to rest then stop me. Because no matter what I do, my body will pay me back later. Sometimes I dont even know when to stop. It is hard to learn limitations on a disease that is so inconsistent. And there are times I need you to step in and take care of me. But I wont say it or ask for it because; I am too ashamed and too hurt. I just dont want to be a burden.

If I find out something new about FM, please do not assume that I am being a hypochondriac or overreacting. There is so much new information out there and new studies being done everyday. I know this can be hard to accept and understand. It is for me too as well. It is hard for me being the age I am and people saying wow you are so young, how can you be sick. Or you just need to push yourself and try a little harder. Please know that I am already doing it on my own. These kind of statements hurt me and make me feel as if you dont see how much I am fighting to just be me and enjoy my life.

There is so much that you just dont see about me while I am suffering with FM. The late nights I suffer through from restless sleep, waking up with jerking pain and twitches. Along with the nights I find it so hard to fall asleep because I am in too much pain. How the pain, exhaustion and weakness that I suffer with everyday never seems to go away but only get worse. Unlike you, I have to fight my body to live a normal life. So think about how hard it is for me to hear oh you are just depressed while I suffer through this. Wouldnt you be depressed if you had to live your life with chronic pain, exhaustion, and weakness from day to day? But dont misunderstand this isnt depression because of depression; this is depression from how the disease affects me. Those are two totally separate things.

The best way I can explain how FM feels is overused but it is the best analogy there is. Imagine the worst flu you ever had. Remember the constant chills and sweating, the weakness, the exhaustion, the nausea and/or vomiting and the constant muscles aches and pains? Even when rolling over in your bed took all of the energy you had. Imagine that on a day to day premise.

So when there are times I need to lay down or sit down or take medicine, just know I am fighting to keep myself from getting worse later on. I have to pace myself. I have to learn what works best for me so I dont damage my body anymore than what it already is on its own. If there are times I ask you not to touch me please dont take it personally. With the sensitive skin and the pain, touches can be excruciating when it is out of control. However, dont be afraid to touch me, hold me, and love me. I need human contact to know I am loved, that I am not alone, and that I am needed. So if you need to ask me for permission to touch me before you do so you can feel better about touching me, then please do so. Please dont let this disease alienate you from me. I have no control over what this disease is doing to me. And I dont want this disease to destroy you and me.

Just know that I love you and that you are the reason why I get up and fight everyday. I fight for normalcy. I fight for life, love, and understanding. This is not an easy road for anyone to travel on even for me. So next time you blow me off or you get frustrated, stop and think about what it is doing to me. I am still human. I still have things I want to do and people I want to be with. I am doing the best I can do for me and who I am, within this disease. I am not letting this disease define me. However, that does not mean that you need to ignore what this is doing to me.

I would also like to take a moment and tell you, I know how hard this can be for you. I want you to know how helpless, scared, and frustrating this can be for you. Sometimes when people dont understand something, they tend to give up and walk away or ignore it. Please dont do that because that would mean you were ignoring me. And if there is ever anything you wished to discuss with me about my disease or how you feel about this, please do not hesitate. I would love to be able to help you as you are helping me. I want to be able to calm your fears and show you that everything will be ok. And by us discussing this disease, the greater understanding, patience, and love we will have for each other. By us working together with love and understanding, we can face anything this disease can dish up!

Please do not misunderstand; I want to know about you and what is going on in your life. I do care about how you are feeling and the things you are going through. I am still here for you. Please dont shut me out; I will be there for you. We all just have to remember to keep things in perspective which sometimes means looking at life through anothers eyes. If you are hurting dont shy away and say my pain (or whatever it is) is nothing compared to yours. That is so not true. Each person has their own health issues and their own way of coping. I do care. And I try not to compare for the sake of who is suffering the most. I may compare only for greater understanding that is all.

I hope and pray that this letter was helpful and useful. I hope it opened your eyes to understanding me better. I would encourage you to research as much as you can about FM that way you can know more about how this is affecting me. There are a lot of other symptoms and diseases and disorders that are associated with FM that I did not discuss. I only hit the few main ones. The ones that I thought would be easier for you to make associations with.

Just know that I love you, you are the reason why I fight. I wont give up!!! So please dont give up and ignore me. Together we can do anything and we can fight this disease head on!!