Feeling isolated from my friends and family, I decided to seek support at a lupus meeting. My husband drove me into the city to go to a educational meeting, and I remember being so nervous walking into the room with him. I was excited to finally be meeting people like me, but I just didn’t know what to expect. I hadn’t managed too many patients with lupus before, as they usually went to see a rheumatologist.
I walked into the room and my heart dropped. There were people of all ages, mostly women. I watched as they hobbled in with canes, others sitting looking disheveled. There were a couple who looked put together, but the majority really looked like they had struggled to make it out of their home.We sat at tables in groups, and no one was talking to each other. There was an emptiness and sense of hopelessness in their eyes.
After the guest speaker presented, she started to answer audience questions. If I was feeling uncomfortable before, then now I was really a fish out of water. The majority of the questions were not so much about the disease itself, but about the social issues. How to apply for different disability services, where to find free care. Some just simply stating that they felt lost.
I wanted to run right out of there. No. They were not like me. I would not be like them. I would continue working. I had plans. I had a life. Fear crept inside my heart. Anxiety about becoming so disabled I would not be able to continue my career as a physician filled my head. Years of hard work would get flushed down the toilet.
I tried to ease my anxiety by talking to the the presenter after the question and answer session.I asked her what my options were.Are there ways I could make my career work for me? Medicine is a high stress job, and I was wondering if there was something I could do within the field that was less taxing. What if I couldn’t work? What would happen to my loans? Or if I decided to work part-time, would there be a way for me to get health insurance?
To my dismay, she didn’t have any answers. She suggested I speak to social services. I left that meeting more terrified and isolated than before. I decided then that I wanted nothing to do with the lupus community, and I would just deal with my problems on my own. It was just too scary to face my future with this disease.