A letter that I copied and pasted from somewhere else and changed to suit my own situation. I think I changed quite a bit of it but I don’t remember. Feel free to take mine and copy and paste it yourself, change it, and give it out! It made my family and friends a lot more empathetic to the things I was going through. It’s another long one.
I am posting this letter to help you understand my feelings as I deal with arthritis and the changes it continues to bring to my life.
I am scared. I don’t know what the future holds for me. Will I end up crippled and in a wheelchair or will I be one of the lucky ones who have very little joint damage? Will I ever be able to get out on my own or will I have to depend on my mother for the rest of my life? 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. Likewise, 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 about a year now. 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. I may be tired. I may be in pain. I may be sicker than ever. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome to.
I am angry. Arthritis has taken so much away from me. I can no longer do many of things I once enjoyed doing. I have never and will never run with my children. I sometimes have difficulty just completing simple tasks, such as opening a jar, showering, or lifting things. If I appear angry please understand it is the disease I am angry with, not you.
Please understand that chronic illnesses are 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, ask if I can and I’ll tell you. I also want you to know that arthritis moves around. Yesterday my shoulder was throbbing; today it is my knee, who knows what it will be tomorrow.
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. Arthritis does not forgive. Also, if I ask for your help with something generally 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 awhile I wouldn’t ask for help and it would make me feel worse later. I’ve learned 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 keep that in mind. Please don’t tell me you know how I feel. You don’t. Don’t offer me sympathy; I don’t want your pity. But do offer me support and understanding, which I 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. If I make the wrong decision, it is I who has to deal with the consequences. Don’t tell me how Aunt Martha cured her arthritis by drinking vinegar or your friend in Tibet that drinks an ancient tea or any other supposed remedy. I have done much research and I keep up on current treatment options. I speak with my doctor regularly, if there is a possible cure out there, I will know about it.
Please understand that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.
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. You may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts when you exclude me. Maybe I can’t skate with everyone else but I can bring the hot chocolate and watch. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally.
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 am me, I am not my disease. I am more compassionate to others with similar aches and pains and I am a better person because of it. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, just like you.
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