Living with Sarcoidosis Can Change Your Thinking for the Better

I once heard an old man say that “a changed mind is a dangerous thing.”

In the summer of 2017, I spent two months in the hospital due to spontaneous pneumothorax. My lungs are in pretty bad shape because of pulmonary sarcoidosis. I’ve been vividly remembering that time because of today’s pandemic era living conditions — isolation isn’t new to me. Today’s situation provokes a lot of stressful memories. I guess it’s safe to say that anyone living with a chronic health condition can develop post-traumatic stress disorder. Anyone who experiences the disorder can tell you first-hand how little things can trigger big emotional anxieties.

Sarcoidosis combined with PTSD can have a person thinking and feeling all sorts of things. One minute you’re feeling great and “normal” (whatever that is) and the next minute you’re second-guessing your health because you got dizzy while standing up, or you may have pushed yourself a bit and now you’re slightly out of breath. These little triggers can have a profound effect on a person’s mental stability.

Memories are hard to lose

During my 2017 hospitalization, a great nursing staff closely monitored my condition. They were very down to earth and made me feel like I wasn’t an inconvenience to them or myself. After the two months of recuperating, I returned home to pursue a sense of normalcy.

It was a slow process, but I got to a point where I was doing much better, eventually improving enough that I joined a gym to keep physically active, albeit in a somewhat controlled environment. About five months in, I experienced another spontaneous pneumothorax in my other lung. This episode was a little more tricky than the first. Throughout the summer of 2018, I was in and out of the hospital four times, one time being intubated in ICU for about two days. Thankfully I was able to recuperate and return home to my family and friends.

Don’t disrupt your mental healing

This past Monday was the two-year anniversary of my last spontaneous pneumothorax. Honestly, I’d been feeling some type of way about it. Although I wasn’t feeling depressed, I wanted to spend the day alone. Throughout the day, I had fleeting thoughts of that particular pneumothorax and the multiple hospitalizations associated with that event. Eventually, I shook the feelings of distress and tried to focus on the progress I’d made since then.

Over the past three years, I’ve been cautious in regaining the life I had before the spontaneous pneumothorax. I’ve slowed down a bit, and now that I think about it, it seems like folks have taken pity on me — but that has to change so I don’t become a victim.

It’s time to change your mind

“A changed mind is a dangerous thing.”

I think about that a lot now and it’s starting to make sense. I recently started editing video again, like I did professionally for over 30 years, and picked up a client who had no direction of how he wanted his project to go. I started working on his project months ago, and we finally finished the first part after many changes and wasted conversations. After submitting my invoice, he took issue with the cost, and then he told me that he had already had a budget in place and that my invoice had surpassed it.

Sarcoidosis can cloud my judgment. I was feeling so happy and excited to get back into what I love doing, but I also felt obligated to take this job because I felt it may be the best I could do, thanks my health.

For 30-plus years, I had a good life and career, but then sarcoidosis slowed things down. I may have lost a step or two, but I can still do what I love to do. Accepting something lesser just makes me think that I’m letting sarcoidosis dictate my path.

If you still have a passion for something, do it. Don’t settle for anything because you think you’re broken. Sarcoidosis can’t and will not dictate your story. Apologize for nothing. Only you can tell your story — do it fearlessly.

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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 Services, and are intended to spark discussion about issues pertaining to sarcoidosis.