DON’T assume because I look well that I feel well. Looks can be very
deceiving. Many days I look great, but I feel terrible.
DON’T tell me you know how I feel. No one knows how anyone else feels. Two people with the same disease may feel totally different. We all have varying thresholds of pain, and pain cannot be measured.
DON’T tell me about your great-aunt GERTRUDE and her arthritis, and how well she managed in spite of it. I am not AUNT GERTRUDE, and I am doing my best.
DON’T tell me, “It could be worse”. Yes, it could be, but I don’t need to be reminded.
DON’T decide what I am capable of doing. Arthritis doesn’t affect the brain. Allow me to decide what activities I can participate in. There may be times I might make the wrong decision, and if I do, I’ll know it soon enough.
DON’T be upset that you cannot ease my pain. It won’t do any good for both of us to be miserable.
DON’T ask me how I feel unless you really want to know. You may hear a lot more than you are prepared to listen to.
DON’T assume because I did a certain activity yesterday that I can do it today. Arthritis is ever-changing.
DON’T tell me about the latest fad ‘cure’. I want to be cured more than anything, and if there is a legitimate cure out there, my doctor will let me know.
DO learn everything you can about the disease. The more you know, the better equipped you will be to know what to expect.
DO realize I am angry and frustrated with the disease, not with you.
DO let me know you are available to help me when I ask. I’ll be grateful.
DO offer me lots of hugs and encouragement.
DO understand why I cancel plans at the last minute. I never know from one day to the next how I will feel. Arthritis is like that.
DO continue to invite me to all the activities. Just because I am not able to bike ride along with the gang does not mean I can’t meet you for the picnic at the end of the trail. Please let me decide …
If you liked this open letter, you might want to read one of the versions people have adapted for other illnesses, or other languages, take a look at the open letter options page.
Well said. There are days where I feel better than I did the day before, but most of the days are just filled with pain and the frustration of dealing with the pain. I do my very best to “mask” the pain and push through for my wife and family. But there are times where I would like to lay in bed and not stress the joints. Try telling an 11 year old that you hurt too much to play catch with him. You know what I do? I play catch and then ice everything down after he goes to sleep. (I have many flexible ice packs in freezer and they get a great deal of use).
Hey, some days are better than others. And no, I cannot ride with them om the bicycles, but I can meet them at the park and have a picnic lunch ready. I did that today.
“Yes, it could be worse”. You know the great thing about all of this, we all know that it will get worse. I have a supportive family, stopped taking any of the drugs the doctors gave me to mask the pain, and am trying to find other alternatives to handle the pain. For now, it is Bio-Freeze, Ice and a lot of fresh fruits. I swear fresh pineapple has done wonders. Since I stopped taking any drugs, I have a fruit salad every morning and I swear by the pineapple as given me back more use of my hands.
i have chronic ra. for 2 years now it has changed my life in somany ways. everyday its something new. now i got it in my chest and its like a heartattack. i had my heart checked out and its fine. when i get it in the chest it lasts for 24/36 hours. cant breath/ lye down /sleep/ i just sit in a chair and ride it out.my ra doc says that there is not alot that can be done for this. moltron/ heating pad/steroids=the treatment. if anybody has this painfull form of ra please tell me if there is any treatment you can pass on to me. signed desperate