I also waited in telling my family, but for different reasons. My parents and two sisters live in a different state and I didn’t want them worrying about me. I knew they would want to come up and see me, and I lived in such a tiny place, and could barely take care of myself, I wasn’t ready to host them.
I told them a couple weeks after I was officially diagnosed, but I minimized it considerably. They naturally want to see me and I agreed to let them come a couple months later, after I had moved into my new place with my boyfriend.
When they came, it was like nothing was different. I had been on the high dose steroids for a couple months, and my energy and pain levels were almost back to normal. I was able to take a day trip out to the beach with them and spend the day walking around the city another day. The only thing that was slightly different about me was my shape. My mother had bought a couple dresses for me and when I tried to put them on, they wouldn’t zip up the back.
My family went back home with the sense that everything was normal, and I was fine. The lupus had resolved, and I was no longer sick. Part of me had wanted them to feel that way because I didn’t want to stress out my not so healthy parents, but another part of me wanted the attention, and wanted them to be concerned. I would feel jealous when they would go running to my sister when she would have a mild asthma attack, while I was suffering with something far more serious.
My family really didn’t understand until I came home for a week on vacation. I had been having serious fatigue and body aches. Usually when I went home on vacation, I was always out visiting with my friends, coming home only to eat with my family. Since I went to medical school and college in different cities, an hour away from each other, I usually did quite a bit of travelling and overnight stays. This time it was different. I stayed in bed all day, not even wanting to go out for special mother/daughter time. I think it really hit my father when he saw me walking bent over because I was so stiff.
I still hide a lot of what’s going on with me, but I’ve learned that I don’t have to keep it all a secret. I can share my feelings and receive the support I need, without distressing my family. I don’t need shut out the people who love me anymore.