Please go here to read information about the Open Letter and its cousins and translations.
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.
