Explaining your chronic illness to family

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Explaining your chronic illness to family can be a good or challenging experience. There will be some who will totally understand what you’re going through, and unfortunately some who will not.

Yesterday,  I had some family over visiting. After spending some time in the house, we decided to go outside and let my cousin and nephew play. I wasn’t feeling too well but I didn’t want it to stop me from spending some time with family.

After about 20 minutes outside, I started to feel tired. I had called my brother, who was inside, to switch places with me to watch the kids. A family member said to me, “just sit on the step”. I told them I really didn’t want to. The sun was becoming too much on my body and I really needed to come inside. They proceeded to say to me, “oh, so you can’t be outside”. And I kindly let them know that I am sensitive to the sun and if I stay outside any longer, the way I feel now will increase. They were not mean but I definitely felt their intense curiosity.

When explaining my autoimmune disease to family and friends, it is always a touchy situation. I know they mean well, but I don’t know how they will respond. We are all in our 20s and 30s, but I can not do all the lively stuff that they can do.

I am always willing to educate them on my illness and experience. For instance, yesterday I was explaining to them my gastro issues. One my family member’s thought my mixed connective tissue disease was in remission because I now have a new medical issue. I kindly explained to them that my autoimmune disease can be a precursor to developing other illnesses. The illness attacks your organs. So any complications I have, for instance, my gastro problems, could be a direct result of the mixed connective tissue disease.

I let them know that mixed connective tissue disease is a chronic disease, symptoms generally come and go, and it is unpredictable. You can ask me to go out with you early in the day and by the time night comes, I could be tired. For this reason, I know many will not understand. Sometimes, not even family. Thankfully, I have supportive people around me, especially my father who helps me explain to others some of the symptoms I may be feeling.

I never want to be burden or divulge too much information as if I’m complaining. Sometimes, I simply want others to understand I suffer from a chronic illness. Some days will be good, some days will be bad, but the main thing for me is that I’m still living.