Not Alone Anymore

Chronic illness is isolating. Susan Sontag, in her book Illness as Metaphor, talks about how those of us with chronic illness have been given a passport from the land of the healthy to the land of the sick. We find ourselves in a culture that we don't understand. When we are among the healthy we feel like foreigners. When we find another person with our condition or illness, there is an instant connection. We are not alone anymore.

Last fall, I was on retreat with 19 high school girls. Before the retreat, I knew that one young lady had Type I diabetes and some other autoimmune issues as well. Before we all went to sleep, another girl found a test kit and brought it to the one with diabetes asking, "Is this yours?" The girl with diabetes opened it, looked puzzled and said, "No, this is not mine. There is another diabetic here!" She looked around with eager anticipation. They connected quickly. Then when it was time for them to test, they happily sat together on the same cot to test their blood sugar. They were not alone anymore.

A few weeks ago, I met a parent of one of my students. I noticed immediately that she had rheumatoid arthritis, but did not glance at her hands again. At one point in the conversation, I mentioned that I have lupus. She knew. I am pretty public about my lupus so most of the people with whom I come in contact are aware. She said that she had RA. I told her that I noticed. In March, I am going to France with a group of high school students and parents. This parent is one of them. I ran into her tonight after opening night of Grease and we talked about the trip. The stress of international travel can be an issue for those of us with autoimmune disease. She said, "I am going to bring some prednisone just in case." I said, "Good idea, I will do the same." In that brief exchange about prednisone, we were not alone any more.

When people come to our lupus support group for the first time they often cry. The first tears are always about the difficulty of admitting that you have this disease. Tears near the end of the meeting are usually about deep relief in realizing that the new person is not alone anymore.

If you have a chronic illness, you may feel alone and isolated. You don't have to be alone. Most disease foundations have support groups. If you can't find one near you, there are countless on line groups. You don't have to be alone. You can reach out and connect to people in person and online and then look around and say, "There is someone like me here. I am not alone anymore!"