I came across this letter today and I loved it. So please go read the original if you like. My version is below.
My Letter to those Without Rheumatoid Arthritis and Fibromyalgia (or auto-immune dysfunction as I like to call it)
I am posting this letter to help you understand my feelings as I deal with my “invisible conditions” and the changes they continue 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 be mostly self-sufficient again or will I have to rely on others more and more? 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 fifteen years now, that’s half my life. 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 and Fibromyalgia has taken so much away from me. I can no longer do many of things I once enjoyed doing. Decorating cakes and making little pastries is literally impossible some days. Other days I can get it done but I suffer for it for days if not weeks. Going walking for hours, once my main stress reliever and “me” time is out of the question. I love writing with real paper and a real pen, a nice pen. It has been ten years since I could do this for any length of time. Even typing can do me in after fifteen minutes or so. 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 these conditions move around. Yesterday my whole body was throbbing; today it is from just under my shoulder blades up, who knows what it will be tomorrow. I am terrified that I won’t be able to run and play with my soon to be here baby. That I won’t be able to pick her up when she needs it, or even more terrifying, that my arms or my legs will give when I have her in my arms and I will drop her. The thought of changing diapers, doing up tiny buttons and snaps and folding all the clothes and diapers makes me cringe. I swear my body hurts just thinking about it. Do not take this to mean I do not want this baby and do not tell me that “you’ll be so busy you won’t notice the pain”, it’s bad enough that my own doctors tell me this.. These conditions are real, not a construct of my brain. I have the blood tests that say POSITIVE on them, regardless of what my doctors try to say. I know how I feel. I do not like feeling this way. I do not wish to be doted upon. It’s a lot of the reason I become more and more of a recluse. I don’t want the sad looks I get from people, I don’t want to see the pain in their eyes, I don’t want them to see me when I can’t open a jar of jam and more importantly and exponentially more hurtful is the disbelief in their eyes.
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 I have to deal with the embarrassment rather than putting myself through more pain. I still haven’t quite come to terms with this yet, so there will be times I will need you to remind me that I should slow down or ask for help. Please do it gently, even though I need to hear it it hurts me deeply every time. It’s not your fault, so if I look dejected just know that it’s not you personally I am upset with.
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 and Fibromyalgia has affected my joints and physical body, not my mind. They say that Fibromyalgia can effect the memory, and I will admit to being more forgetful then I used to be. This I believe is due to chronic pain NOT a direct effect of either of my conditions. 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, am working on finding specialists who will listen, 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. Please do pick up the phone and call me, or email me. With these conditions comes some pretty heavy depression as more and more things get stripped away. I truly appreciate human contact, even if it’s just a two minute phone call to say hi. It reminds me that I am not invisible and still part of the land of the living.
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.
February 2nd, 2012