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 you can’t be outside”. And I kindly let them know that I am sensitive to the sun and if I stay out too much longer, the way I feel now will increase. They were not mean but I definitely felt their intense curiosity.
When explaining my lupus to family and friends, it is always a touchy situation. I know all of them mean well, but I don’t know how they will respond. We are all in our 20s and 30s but I cannot do all the lively stuff that they can do.
I am always willing to explain to educate them on my illness and experience. For instance, yesterday I was explaining to them my gastro issues. One my family member thought I didn’t have lupus anymore because I now might have another issue. I kindly explained to them that lupus can be a precursor to developing other illnesses. It is an autoimmune disease that attacks your organs. So any complications I have, for instance, my gastro problems, could be a direct result of lupus.
I let them know that lupus 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.