I Accept My Disease, But I Intend to Keep Fighting It

[Joachim]

“You really should get that bump checked out.”

It was September 2014, just after Labor Day, and a friend was pointing out the obvious. The bump, which I thought was just a rash, seemed to have no intention of going away. I didn’t think much of it at first, but after a few weeks of applying over-the-counter cream to no avail, I knew it was time to see a doctor.

I was lucky in many ways; 2014 came at the tail end of a traumatic few years, but I found a dermatologist near my home who was able to schedule me for an immediate appointment.

After determining what it wasn’t, the dermatologist sent me out for chest X-rays. I couldn’t understand how a bump on the nose turned into a scan of my chest, but that doctor had a suspicion that ultimately was correct — one that dramatically changed my life.

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It was almost exactly how the Mayo Clinic describes it: “Many people with sarcoidosis have no symptoms, so the disease may be discovered only when a chest X-ray is done for another reason.” In my case, the bump was the reason, and the X-ray confirmed it. I had sarcoidosis, with the damaged lungs to prove it.

From there, my story resembles that of many others. The last seven years have seen me go to more than 20 doctors for dozens of medical appointments and scans, and take countless pills. (After I realized I take more than 100 pills monthly, I decided to stop counting.)

I do all of this just to have a chance at a “normal” life.

The hard part, hard fought

One of the most important things I have needed to do is simply accept that I have sarcoidosis.

For many of us, this is hard to do. After all, the medical texts tell us that many people go into remission within the first few years. That hasn’t been my story, and I have found it helpful, if not crucial, to focus on my care in a thoughtful and intentional way. I hope that one day my sarcoidosis will go into remission, but I plan to prepare for it to be a part of the rest of my life. I accept this to be my most likely reality.

But I can continue to fight for a different outcome. I can accept that I’m likely to have sarcoidosis for the rest of my life, but I’m equally determined to fight it for the rest of my life, too.

How do I fight? Well, to be honest, the fight changes from day to day. Sometimes, the fight is just getting up on those days when that odd, dull pain decides to visit. Other days, the fight requires me to push my body beyond what doctors say I should be able to do — like going on a long run.

Most often, the fight is simply deciding to move forward with grace and acceptance.

It is easy to be mentally and physically drained by this disease. Sarcoidosis is unrelenting and unforgiving. Unlike me, sarcoidosis never seems to get tired. Sometimes I wake up and it takes a few minutes to truly know how I feel. Or rather, how sarcoidosis is going to let me feel. So, I’ve learned that if I’m not ready to fight every day in some way, then sarcoidosis will win the day.

For my fellow sarcoidosis fighters, whether you call yourself a “survivor,” a “warrior,” a “snowflake,” a “fighter,” or any other term, I see you and I salute you. And since we also need to be our own cheerleaders, for my seven-year anniversary, I also want to salute myself. It has taken a while for me to get here and to learn how to move forward, but I feel like I’m blessed beyond measure.

Here’s to another year of accepting — but keeping up the fight, too.

***

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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