Living With Sarcoidosis Allows Me to Share My Truth

[Joachim]

I recently read that social media basically captures our best fake day.

I found that comment extremely funny, then quite sad. If I were to clean up that comment, I’d say something like, “Social media sometimes captures our best fake day, if we let it.”

Because for me, and most folks I personally know on social media, what you see is usually what you get.

Now, I freely admit that I rarely post a picture that I think looks just terrible (and I have plenty of those). But it does generally show me, with no filter — partly because I’m not very good at them.

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Besides, I find that just sharing your truth is the best media of all. Ultimately, I find it a lot more interesting than a “perfect” post. I suppose it’s a combination of getting older and experiencing some tremendous losses and blessings over the years, especially since my sarcoidosis diagnosis.

Oddly enough, it took me getting sick to discover certain parts of me. Illness helped me better embrace those bad days (and living with sarcoidosis surely gives me plenty of those). It’s not always easy to share, but I strive to take those wins and be as open as possible.

For example, while on holiday traveling with my lady, we were talking about how training was going (I’m attempting to run my first marathon this fall). We were considering what parts my mindset, pain tolerance, and approach play in my running, especially when pulmonary sarcoidosis should prevent me from be able to run so many miles. Every day, I’m grateful that despite sarcoidosis, I’m able to run.

But that talk helped me remember that I never even ran long distance at all before my diagnosis. I have no idea how I would’ve performed in my 20s or 30s before I had sarcoidosis, because I wasn’t even running then. Back then, running just one mile would’ve been a big deal. These days, one mile is the start of my warmup.

It’s almost like it took this illness to remind me to live fully.

And from the sarcoidosis, I’ve met some amazing fellow patients and fantastic columnists here at BioNews, and I’ve even joined the Foundation for Sarcoidosis Research Patient Advisory Committee and the American Lung Association Audit and Risk Oversight Committee. Would any of these have happened without my sarcoidosis? I suppose we’ll never know.

But this I do know for sure: Focusing on my best perfect fake day might look great. But it’s not real. And it’s boring.

Maybe it’s time to post a bad picture after all.

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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.

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