Letter to Family and Friends

[CJRT]

I found this when I was diagnosed with Fibromyalgia and I was having a hard time getting people to understand that I just could NOT do what I had been doing.

It really helped. Some of you may have seen this. I'm posting it because of another thread about families not helping out.

I hope some of you can use this. Feel free to customize it. You will have to change the Dx as it is written for Fibro and depression. I did. I did not write this, I found it on another site.

Dear Friends and Family,

Allow me to begin by thanking you for taking the time out of your day to spend some time with me and get to know me better. I hope you might get a clearer understanding of who I REALLY am and not who you might think I am.

I want to talk to you about my Fibromyalgia (FM) and my Depression. Many people have never heard of these conditions and for those who have, many are misinformed. And because of this judgments are made that may not be correct. So I ask you to keep an open mind as I try to explain who I am and how FM and Dep. has assaulted not only my life but those whom I love as well.

You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who's attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You wont see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because people can't see it and do not understand....

Please don't get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die....

Most of my "friends" are gone; even members of my own family have abandoned me. I have been accused of "playing games". I have been called unreliable because I am forced to cancel plans at the last minute because the burning and pain in my legs or arms is so intense I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm. Hearing about it afterwards also cuts like a knife because I so wanted to be there and to experience the fun like you did.

I feel like a child at times... Just the other day I put the sour cream I bought at the store in the pantry, on the shelf, instead of in the refrigerator; by the time I noticed it, it had spoiled. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to "lose" things I know I put right there. As I try to maintain my dignity the Demon assaults me at every turn. Please try to understand..

Sleep, when I do get some, is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably. I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.

And just because I can do a thing one day, that doesn't mean I will be able to do the same thing the next day or next week. I may be able to take that walk one day, but the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. And there are those who say "but you did that yesterday!" "What is your problem today?" The hurt I experience at those words scars me so deeply that I have let my family down again; and still they don't understand..

I have become a prisoner of my own body and of my home. I spend most of my time alone. You know this is not how it used to be for me. I hate being alone. But I have no other options at this point as most days it is a struggle to get dressed. I have had one visitor make a point to stop over several times in the last months. No one else wants to "bother" me. Do you really think it would be a bother? I would welcome just 10 min. of someone taking the time to check on me or just to say hello. If I didn't feel like it, I would tell you. But you don't even call to see. Calls don't "bother" me either. If I am unable to take a call, I don't answer the phone. If I an unable to have a visitor I would tell you.


On a brighter side I want you to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love to tell that joke to make another's face light up and smile at my wit. I love my family and friends. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask? I love you and want nothing more than to be a part of your life. And I have found that I can be a strong friend in many ways, but maybe not in others due to my limitations. I am your friend, your family member, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.
But then I feel like my illness has become a burden to you and that my constant pain and fatigue has come between us because maybe you don't understand me. I have had many drugs prescribed for me that have affected my moods and my personality. You know this is not me. I hope so anyway. You knew me before, so surely you know that something has happened. But have you asked? Have you called? Do you understand? All I ask for is understanding.

You and I are not that much different. I too have hopes, dreams, goals. and this demon.. Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now. Please understand..

Thank you for spending your time with me today. I hope we can work through this thing, you and I. Please understand that I am just like you. Please understand..

CJ

[bella67]

Cj,

I have fibro too, and if i ever sent that (beautiful) letter out to my family they would laugh or make some kind of comment like "oh cut the drama". So, sometimes it's just easier to suffer in silence. But for others with more compassionate family members this is a great tool.

[zandvoort]

Thanks for posting such a helpful tool! Another great article I saw was on the MS society website entitled something like- "But you look so good!". I thought I'd use it to help people understand what is happening to me if I get an MS dx. I must admit, for my family, something factual would work better than the emotional plea for understanding described in the letter.
Great idea to post these aids- especially in light of the recent postings.

[kimpossible67]

Well, I'am going to try it. It certainly can't hurt to try. Thank you CJ, you are strong and determined and I'm trying to pull it together so I can again, be strong and determined, in light of my illness. Bless your heart.

[CJRT]

Originally Posted by kimpossible67

Well, I'am going to try it. It certainly can't hurt to try. Thank you CJ, you are strong and determined and I'm trying to pull it together so I can again, be strong and determined, in light of my illness. Bless your heart.

Sometimes I think that illness is what has made me strong and determined.
So I guess if I have to suffer with whatever it is I have (the not knowing and being shunted around to dozens of doctors and dozens of tests is frustrating, but I guess its been character building for me), then the up side is its made me more assertive, stronger, better able to cope (most days, I have pity party days too) with things. That and going through a long illness with both my mother and a very close friend both of whom died of cancer, so I think that I finally just had enough one day and came out of my shell so to speak.
Believe me, I wasn't always this way.

Zandvoort, I'd like to see that article on "but you look so good". Do you have a link?
I think having some tools like that might be helpful to a lot of people because I too have had to deal with people that have said that very thing to me: "you look great, how can you be so sick?"

And maybe a factual letter to family and friends would be good too to go along with the emotional plea letter I posted.

I think its just educating those around us on what's exactly wrong with us that will help.

Yeah, its frustrating as heck for my family when we have plans and I can't go through with them because I feel so bad. But its frustrating for me too. I want to go to the concert, or the park or whatever and then on top of the disappointment, I have the guilt that I deprived my family of something fun too.
I'm fairly lucky now that my husband and daughter do for the most part understand and help out. But I know they get tired of it too. I would and I did when I was the caregiver.
My problem seems to lie with the rest of my family and some friends especially on the "why aren't you able to work? You don't look sick". (number one, its NONE of their business if I work or not and number two, I'm sick and tired of the assumption that because I'm not on crutches or in a wheel chair or have an obvious disability that I'm not sick. Very frustrating.)