The Grief and Relief of Being Diagnosed With Sarcoidosis
It seems there’s a commemorative day for just about everything. Today alone apparently is the Gold Cup Parade, National Chocolate Pecan Pie Day (I’m all for that), National Radio Day, and World Mosquito Day (no thanks).
I recently learned that Aug. 30 is National Grief Awareness Day, which according to National Today is “dedicated to raising awareness of the myriad ways in which individuals cope with loss,” which for me takes on a whole new meaning.
Usually, when we hear the words “grief” and “loss,” we think of losing a loved one. We mourn their passing and think of all the ways life will never be the same without them. For people with chronic illnesses like sarcoidosis, there’s a different kind of grief. We mourn the loss of our healthy selves and know our lives will never be the same.
First are the physical changes. We gain weight or have visible manifestations of cutaneous sarcoidosis, so we don’t look like ourselves anymore. We have chronic pain, fatigue, or difficulty breathing, so we don’t feel like ourselves anymore.
Symptoms leave us unable to do things we did when we were healthy. Walking, running, and other physical activity may no longer be possible if sarcoidosis affects our joints, heart, or lungs. (About 90% of patients have pulmonary sarcoidosis.) Working, socializing, and traveling present challenges due to fatigue and the unpredictability of our symptoms.
We see friends, family, and former co-workers go on with their lives, and we are left behind. We know the healthy person we used to be would have jumped at the chance to hike that nature trail, climb that rock wall, or attend that paint and sip class, but she’s gone now, and we miss her.
I miss her.
I miss me.
But thinking about all of this also reminded me of something I saw on Instagram not too long ago, posted by @ipf_raremark. It was just text, a dictionary-style definition for a new but fitting word:
The feeling you could get after a rare disease diagnosis.
When grief and relief collide.
I know, it doesn’t sound like relief is something anyone would feel when diagnosed with sarcoidosis. It’s a rare disease that most people have never heard of, it can affect any organ or system in the body, and it has no cure and few moderately effective treatments. It is not good news.
But it’s not like it’s coming out of nowhere. We didn’t go for a wellness checkup and find out that there was a problem. We felt something was wrong and went to the doctor to find out what. In reality, most of us have gone to a lot of doctors to find out what was wrong. We’ve spent weeks, months, and years trying.
I’ve lost count of how many doctors I’ve seen, and it took eight years from when I visited my first one until I was diagnosed with sarcoidosis. For the first four years, I was told time after time that there was nothing wrong — I looked fine, so I was probably just depressed. Then I developed more visible symptoms, including swollen feet and ankles and skin rashes, and I spent the next four years with rotating misdiagnoses and treatments that didn’t work.
By the time my doctors — a rheumatologist, dermatologist, and pulmonologist — figured out that it was sarcoidosis, based on symptoms, bloodwork, a chest X-ray, and a skin biopsy, I had been through the wringer. I was exhausted. I was frustrated. I was desperate.
So, when I finally had a real answer, even though it was not a good answer, it was validation after being doubted, denied, and dismissed for so long. It gave me a better understanding of what was going on in my body. It gave me peace of mind. It was, in reality, a relief.
With an accurate diagnosis, we were able to determine a path forward. We started new treatments that led to better results and fewer side effects. My symptoms eased up — not completely, but there was significant improvement in my health. Even as new symptoms developed in the time since then, we’ve had this important piece of information to work from.
But the best thing about getting diagnosed with sarcoidosis is the sarcoidosis community. I jumped right into the deep end, joining Facebook groups, attending live events, and volunteering with sarcoidosis organizations. I started a support group, hosted walkathons, and traveled the country sharing my experience. I even started my own organization with three others in my sarcoidosis family.
That’s who they are now: my family. I’ve connected with dozens in person through trainings, events, and conferences, and hundreds more whom I have technically never met. But we share this connection, this bond, this experience that no one else can truly understand, and I couldn’t get through this sarcoidosis life without them.
Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sarcoidosis.