Raising awareness of sarcoidosis isn’t easy, but it’s important

I think I’m the least prepared I’ve ever been for Sarcoidosis Awareness Month. Or perhaps I’m the least busy I’ve been on these occasions. I know a lack of preparedness and a lack of busyness aren’t the same, but something in my head makes them both feel like a negative reflection on me.

I know that shouldn’t be. In fact, I’ve preached to whoever would listen that our worth isn’t based on our productivity. I even wrote a column about it and included it in my recent book, “Kaleidoscope: Rare Disease Stories,” because it’s such an important message. I believe that wholeheartedly. It’s just hard for it to sink in sometimes.

I was diagnosed with sarcoidosis in late 2015. In the years before then, when I had rotating autoimmune arthritis (mis)diagnoses, I’d become an active advocate for those with arthritis. After learning I had sarcoidosis, I was excited to shift (or, more realistically, expand) my advocacy toward that disease. I embraced purple and snowflakes, the disease’s color and symbol.

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For my first Sarcoidosis Awareness Month in 2016, I was eager to jump into everything. When I saw a “purple challenge” asking people to post a photo of something purple on social media, I took it a bit further, wearing and posting something purple every day that month. In the years since, I’ve created “Walk ‘n’ Roll” events (like walkathons, but including those of us who use wheelchairs or scooters), hosted support groups, organized awareness trips to New York City, and gotten proclamations in my county.

When the world shut down because of COVID-19, I shifted my efforts to virtual ones, with special-guest Twitter chats and podcasts, as well as social media posts featuring Self-Care Sundays, Mental Health Mondays, Warrior Wednesdays, Fun Fact Fridays, Sarc Strong Saturdays, a Caregiver Corner, and purple power posts in between. (What can I say? I like alliteration!)

As of this writing, I’ve got none of that this year.

My contributions this Sarcoidosis Awareness Month

For the past several months, I’ve been so busy finishing, publishing, and promoting my book  that I haven’t had much time for anything else. But I’m going to claim the book as a sarcoidosis awareness activity since it includes stories from several people with the disease.

I co-hosted a podcast last week with the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis). Our focus for this episode, which will be available Sunday, April 7, was “Social Wellness with AiArthritis Diseases.” While it’s easy to say how these diseases negatively affect our social lives, we also discussed low-energy options to combat the isolation we so often feel. Since sarcoidosis is the primary cause of my inflammatory arthritis, I’m claiming that for my Sarcoidosis Awareness Month efforts, too.

And of course, there’s this column.

But I don’t have it in me to do more right now. And I’m trying to be OK with that.

I’m giving myself emotional whiplash, going back and forth with this idea. I need to be OK with doing less, but I also feel I need to do more. We all matter, and we all have value without having to work for it, but I feel I have to justify that by working hard enough to make it so.

When I think about it, life with sarcoidosis is filled with this type of predicament.

I was trying to explain it to my physical therapist just this afternoon. I’ve been flaring with severe pain and fatigue, so I haven’t been able to do my exercises — and because I haven’t been doing my exercises, I’m having more pain. Together, we’re trying to figure out just how much we can push for improvement without it backfiring into an even worse flare.

Raising awareness brings about another paradox. The reason I feel I can’t do much is the reason that I need to.

Like so many others with invisible illnesses, I look fine on the outside. To the untrained eye, I’ve got it easy: I have a wonderful husband who takes care of me, so I don’t need to have a job and can just relax at home doing whatever I want.

But that’s far from my reality. I do have a wonderful husband who takes care of me, but that’s because I need him to. “Relaxing” at home is more like shifting around on the sofa for hours, trying to find the least painful position, fighting to stay awake yet unable to fall asleep, reading the same paragraph five times because brain fog has left me unable to process it. It also means looking around at the mess I’m not able to clean up.

Raising awareness means telling my story and sharing the reality of my life with sarcoidosis, but living with sarcoidosis means that I can’t raise awareness all the time. This month (and beyond), you can help with that. You can share my story, or better yet, share your own!

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.