Do's and Don'ts of Chronic Pain

DO NOT assume because I look well that I feel well. Looks can be very deceiving. Many days I look great, but I feel terrible.

DO NOT 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.

DO NOT tell me about your great-aunt GERTRUDE and her HS, and how well she managed in spite of it. I am not AUNT GRETRUDE, and I am doing my best.

DO NOT tell me, " It could be worse. Yes, it could be, but I don't need to be reminded.

DO NOT decide what I am capable of doing. HS 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.

DO NOT be upset that you cannot ease my pain. It won't do any good for both of us to be miserable.

DO NOT ask me how I feel unless you really want to know. You may hear a lot more than you are prepared to listen to.

DO NOT assume because I did a certain activity yesterday that I can do it today. HS is ever- changing.

DO NOT 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. HS 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-