Even though I have Crohn’s disease, I belong to support groups for people with other diseases. I joined them to learn more about what life is like for people who have different illnesses and also to give suggestions that I think will help others in the group. One group I belong to is for people with Still’s disease (Still’s is an inflammatory disease that can affect the joints, tissues, and organs).
A woman in the group wrote that she had recently been diagnosed with Still’s. She said that she was familiar with that illness because a cousin whom she was close to had it for many years and died from it in his early 30’s.
Karen, as I’ll call her, wrote that some of her family members responded in a belittling way, saying that “Still’s is just a fancy name for plain old arthritis.” She said she felt hurt because those family members were dismissive of her year-long struggle to get a diagnosis for her night sweats, rashes, and crippling pain. (As an aside, “just plain old arthritis” can be very painful, and I would feel very hurt if I had it and didn’t get any compassion or understanding from my family.) Karen asked the others in the group if she was wrong for being upset and scared.
I hear that question from time to time from people with chronic illnesses, and my answer to Karen is always the same: No. Make that a very loud and clear NO!!
Having a chronic illness often makes our lives difficult and unpredictable, so it’s very understandable that a person who was diagnosed with one would become upset and scared. And given the fact that Karen’s cousin died from Still’s disease, I would be very surprised if she wasn’t scared when she learned she had the same illness he did.
So the answer to the question: Is it wrong to be upset and scared after being diagnosed with Still’s disease—or any other chronic illness—is no. But a much more important question for Karen to ask is: How do I deal with my feelings of being upset and afraid, and how do I take care of myself?
While she didn’t ask those questions directly, she asked for support from other members of the group, and she received several supportive replies. She was given the reassurance that Still’s disease is different for everyone who has it, so the fact that her cousin died from it was not an indication that she will too. She also received some good ideas for educating her non-supportive family members (who very likely responded the way they did because of feelings of helplessness and discomfort that they weren’t aware of).
But one thing she didn’t receive were any suggestions to give herself lots of compassionate hugs because of all that she had gone through, because of how little understanding she got from her family, and because of how painful and difficult her symptoms were. I’ve seen “self-administered hugs” make a very big difference for lots and lots of people (as it has for me). So I hope Karen heeds my suggestion to do that. I hope you will too. And to learn about some other ways to take care of yourself when you have a chronic illness, I encourage you to read my free report: How to Have a Chronic Illness – Without Letting Your Chronic Illness Have You.