I Don’t Have Anything to Prove While Living With Sarcoidosis

[Joachim]

Chances are you’ve done a lot in your life, and you have more living to do. I guess that’s why folks have bucket lists.

Some will say I’ve been lucky, but I say I’ve been blessed. With sarcoidosis, one health issue can lead to another. It’s important to stay focused and aware.

In battling this condition, it’s common to feel we have something to prove: that sarcoidosis hasn’t taken the best of us.

Usually I don’t think I have anything to prove to anyone besides myself. But sometimes pulmonary sarcoidosis makes me feel like I have to prove to my family and some friends that I’m my old self. My health has altered how I do some things, but I’m still the same dude. When your health changes, you should change with it — to your advantage.

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Before I was diagnosed with this condition, I was always the life of the party. I still am! I was all over the place. I brought the good times, the laughs, and occasionally the wisdom that some sought.

I never worried about having sarcoidosis until I started regularly visiting Temple University’s Lung Center in Philadelphia. My initial doctor was considered one of the best pulmonologists in the hospital. He was around my age, and we developed a very good rapport. He mentioned that down the line, I should consider a lung transplant. I conveniently placed that suggestion in the back of my mind. I was having too much fun living and wasn’t going to miss a step.

Before my diagnosis, I had a great job. I would go so far as to say it was my dream job at the time. I was working in advertising and loving it. I fit right in among the creative misfits. I became a homeowner, got married, raised a family, and managed to save a few coins. As far as I was concerned, I was doing everything a young man was supposed to be doing.

Then life got in the way, and I had to make adjustments I wasn’t expecting. As I often say, when you least expect it, expect it. I had to come to terms with the fact that my life was going to be different. It didn’t happen all at once, but at some point, I knew that things were going to really change for me.

I often look back on years past. I had a ball! I enjoyed my life from my teens until my mid-50s. I was having fun until sarcoidosis reminded me it was present. I was still the same person, just living with this condition.

Oftentimes, those of us with sarcoidosis let the condition dictate our future. I can say from firsthand experience that this balancing act is stressful. I’ve had to put myself in “timeout” several times — not because I didn’t care anymore, but because I simply was scared.

Under these circumstances, it’s important to develop new coping skills. I try not to let stress get the best of me, but sometimes I just can’t help it. It could be the result of sarcoidosis, adjusting to an ever-changing lifestyle, or simply the pressures of life. Who knows? Admittedly, some of my old habits are harder to change than others. I’m sure I’m not alone in that assessment. I think it has a lot to do with my frustration with all of the changes.

When I look back over the last three years, my fear of living with a chronic illness has changed to embarrassment. I’m thankful that I was able to make some needed changes, but embarrassed that I haven’t made some of the most important ones yet.

The biggest change I need to make is acknowledging that sometimes I’m the problem. When you acknowledge a problem, you can address it straight on. The longer you let the problem sit unaddressed, the more it grows — and sometimes it can grow into something you can’t wrangle. I don’t want this to happen to any of us. Deal with it, and be done with it!

For me, this means moving issues from the back burner to the front. Remember, everyone has an agenda. With energy and determination, it’s time to move your agenda to the front of the line, no matter what anyone says.

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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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