Open Letter

Sharon2960

When I was nosying round the forums a week or so ago, I saw an open letter which someone had written, addressed generally to close family, friends etc of people with arthritis. I could do with finding it to copy it for some people I know! Can anyone help me find it again please? Thanks!

dreamdaisy

I think I know of the letter you mean but I cannot recall the specific details. I have a copy somewhere but, because I am not doing too well myself, I cannot lay my hands on it. I can, however, recommend the Spoon Theory and There's a Gorilla in my House, they are two very good explanations of what we have to deal with and manage. DD

PS You are doing OK on the forum front!

Milly8

Do you mean one like this one.



Dear Everyone,
 
This letter is to help you understand my feelings as I deal with inflammatory arthritis and the changes it brings to my life.
 
I am scared. I don’t know what the future holds for me. Will I end up crippled? ? Will I continue to be able to get out on my own or will I increasingly have to depend on others?
 
If you find me being quiet and reflective, please don’t think I am upset with you. I am trying to sort out my fears.
 
I am angry. I sometimes have difficulty just completing simple tasks, such as opening a jar, or lifting things. If I appear angry please understand it is the disease I am angry with, not you.
 
Likewise, please understand the difference between “happy” and “healthy”. When you’ve got flu you probably feel miserable with it, but it goes away. My disease won’t go away and I can’t be miserable all the time, in fact I work really hard at not being miserable. So if you’re talking to me and I sound happy, it means I am happy. Not that I am suddenly “better”. I may still be tired and/or I may still be in pain.
 
Please understand that chronic illnesses are variable. It’s quite possible that one day I am able to walk around all over the place, while the next day it’s agony just walking across the room. Please don’t think this means I’m faking it or than I could “do it if I tried”. I also want you to know that arthritis moves around. Yesterday my neck was throbbing; today it is my feet, who knows what it will be tomorrow? If you want me to do something, ask if I can and I’ll tell you. 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. 
 
If I ask for your help with something it is not because I am being lazy but because I really need help with it. It is not my goal to be a diva and have people waiting on me hand and foot. In fact, it’s rather embarrassing for me to have to ask for help with things I’ve been able to do up until my illness. For a while I wouldn’t ask for help and it would make me feel worse later. I am learning to deal with the embarrassment rather than putting myself through more pain.
 
I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu, tired, achy and sore. Please don’t offer me sympathy; I don’t want your pity. But do offer me your support and understanding, which I truly appreciate.
 
Please don’t assume you know what is best for me. Arthritis has affected my joints, not my mind. I am capable of making my own decisions.
 
Most importantly of all, I still want to be part of the “gang”. Please continue to invite me to participate in activities. I’ll decide if I am capable of it. For example, you may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts so much when you exclude me. Maybe I can’t skate with everyone else but I can bring the hot chocolate and watch and laugh with my friends just as I always have. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally; believe me I will have tried very hard not to cancel.
 
Finally, please remember that I am the same person I was before arthritis; arthritis doesn’t change the heart and soul. I still laugh, I still cry. I still love and I still hate. I still tease and joke with my friends and enjoy being on the receiving end of the same.  I am me, I am not my disease. I am probably more compassionate to others with similar aches and pains now. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, but I don’t need to be treated with kid gloves.
 
Thanks for listening.
With love
Me xxx
 

Sharon2960

Dreamdaisy - thanks, I'll look for those books!
Millie8 - that's exactly the one! Thankyou - I'll copy it at work tomorrow and hang on to it til I feel the moment is right to give it to those who could do with reading it!!!!

dreamdaisy

Hi Sharon, they're not books, they are on the interweb and I reckon that Millie8 has found the one to which you referred (the letter which I mentioned is different.) People who don't have what we have won't understand, just in the same way that I don't understand the feelings of someone who has MS or cancer but I do know what not to say to them (including the ghastly utterance 'I know just how you feel.' No, I don't.) DD

Sharon2960

Thanks everyone - love the Gorilla in your House!!!