I have told the story of how I discovered that I had sarcoidosis. At the time I was first sick, I was convinced that I had lymphoma and finding out that I had sarcoidosis was the best news in the world.
When people thought I had lymphoma, there was a lot of concern about my health. The sarcoidosis diagnosis was interpreted as, “We don’t know what it is, but all that matters is that it isn’t cancer.”
That was my initial reaction as well but it is not an accurate description of sarcoidosis.
My life is not the same now as it was before I discovered that I had sarcoidosis. There are two main areas where sarcoidosis affects me.
One is fatigue. If I chose to, I could probably sleep fourteen hours a day, if not more. I take naps to deal with the fatigue but I am tired all the time. I need to make decisions about what I will do during the day.
The other is pain. Sarcoidosis is a pain… literally. It causes joint and muscle pain. I get pain in a number of joints, especially my knees. I also get some pretty bad back pain.
I am not complaining, as I am doing very well. I am able to work, even in an active job like the army. Compared to many with sarcoidosis, I am incredibly fortunate. I thank God for my health.
Why do I share this? It is not to get pity or even sympathy. Since sarcoidosis is not well known, it is important to me to increase awareness. You may know someone like me who thought they had lymphoma but was diagnosed with sarcoidosis. I want you to understand that sarcoidosis is something of its own and is not just a lack of lymphoma.
You can learn more about sarcoidosis here.