*Note: I was originally asked to write this piece for the Foundation for Sarcoidosis Research blog, in recognition of Chronic Pain Awareness Month.
When most people think of sarcoidosis,
what usually comes to mind is … ok, let’s start by correcting that – most people don’t ever think of
sarcoidosis at all (in fact, most have never even heard of it). Once they learn of this disease, usually
because someone they know has been diagnosed, they most likely think about
breathing problems. That makes sense,
since 90% of people with sarcoidosis have it in their lungs. This can lead to severe bouts of pneumonia,
pulmonary fibrosis (scarring), and more.
I do have sarcoidosis in my lungs
– that’s actually what helped lead to my diagnosis, after nearly 8 years of
trying to figure out what was wrong with me.
But (knock wood) my breathing issues are relatively minor. The most severe symptom I have, the one that
dozens of doctors and dozens of treatments have been unable to adequately
contain, is chronic
pain. Because sarcoidosis can
affect nearly any organ in the body and is frequently
accompanied by a number of comorbidities and/or complications, sarcoidosis
patients often live with pain in a variety of forms, severities, and parts of
the body.
