Sarc warrior Dena experienced what many sarcoidosis patients are told at the beginning of their journey- that sarcoidosis wasn’t a big deal. So many patients hear phrases like “at least it’s not cancer” or “you don’t need to worry about this” when they’re diagnosed. While sarcoidosis does go into remission in a number of patients, FSR is working to shed more light on the experiences of patients who live with this disease chronically. Learn more about our campaign to raise awareness about advanced sarcoidosis and let us know if Dena’s story sounds like your own experience:
Yesterday I was at a doctor’s appointment wearing my purple sarcoidosis awareness t-shirt when a woman came up to me and shared that she was diagnosed last year. She said that she was told that it would likely remit without treatment. I remember being told the same thing four years after my diagnosis, but I have not yet had remission of my disease, although some symptoms come and go. Many physicians and healthcare providers believe that sarcoidosis is a benign and self-limiting disease requiring no treatment and treat patients as such. For those of us who wrestle with persistent symptoms, being treated as if our daily struggles are minor can be disheartening and depressing.
It has been my experience that the two most difficult symptoms to treat, fatigue and pain, affect quality of life the most, which aren’t often discussed at the time of diagnosis. Two years after my diagnosis, fatigue hit me and consumed every aspect of my life. I sought help from my primary care physician several times because its onset was so abrupt causing me to sleep 18-20 hours a day. To say it was incapacitating is an understatement. Instead of feeling supported, I felt like I was brushed off as if the fatigue I was experiencing was insignificant. Pain and fatigue are both subjective symptoms, and there are no tests available to diagnose either or to assess their severity; every individual experiences and deals with pain and fatigue differently. The only recourse patients have is to self-report how their pain, fatigue, or both affect their quality of life, but sometimes there are no words that adequately describe it. And, unfortunately, as I have experienced, our descriptions are minimized and unappreciated.
This needs to change. Educating the doctors, nurses, and other healthcare providers we see and advocating for ourselves are important first steps we can take to initiate change in how the disease is perceived and treated. There are so many things about sarcoidosis that are unknown and misunderstood. Advances in research will begin to shed light on yet unidentified causes and treatments, but self-advocacy is vital until these discoveries are made.
I began my journey with sarcoidosis five years ago. During an ER visit for an unrelated issue, I had a chest x-ray that revealed hilar and mediastinal lymphadenopathy. A month later after a lung biopsy, I learned that the granulomas were due to sarcoidosis and not lymphoma or tuberculosis. Even though I knew the basics about the disease due to my training as a clinical lab scientist, I had no idea how profoundly it would affect and change my quality of life. Both self-advocacy and self-care through acceptance have been key to handling the daily ups and downs of sarcoidosis.
I currently live in southern New Jersey with my two cats, Grace and Luke. They are a constant source of companionship on the days I can’t leave my apartment. Reading has always been an activity that I enjoy. Since I’m a microbiology nerd, I love reading anything related to it, but I also read literary fiction and mysteries. However, it’s through my writing that I’m able to use my medical experience to reach, connect with, and advocate for others dealing with the same problems we all face with this diagnosis.Dena A.