Sarcoidosis is a Pain

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.

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4 thoughts on “Sarcoidosis is a Pain”

  1. This is exactly what im going through. Thankful it wasnt cancer but at least there wouldve been answers and a plan of attack. I feel very in tge dark when desling with sarc

    1. In some ways the hardest part for me was not the fear of cancer but the months where they had no idea what it was or if my various symptoms were connected. What keeps me positive now is that I believe when a flareup starts, I will come out the other side.

  2. My experience exactly. We all need to work to increase Sarcoidosis awareness and educate people who have sarcoid sufferers in their lives. We need to find ways to make an “invisible” disease visible to all.

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