Redefining What ‘Normal’ Looks Like for Someone With Sarcoidosis

[Joachim]

Recently, I read a social media post about how tough every day can be while living with sarcoidosis. Out of respect for the author’s privacy, I won’t quote them, but the general idea was that they do certain things to appear “normal.” Oftentimes, that includes telling friends and family members that they’re fine, even when they’re not. Basically, they don’t want their loved ones to know that the struggles they face never truly end.

That struck a chord with me.

Now, I will add that I’ve had sarcoidosis long enough to recognize that my version of it is quite tough, sometimes painful, and often tiring. My medical situation is much more complex than the average person’s. And yet, I’m grateful, as I’ve met people whose illness is more severe than mine.

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I’m also thankful to have many resources and privileges, including the great doctors at the Johns Hopkins Sarcoidosis Clinic, the world-class healthcare available here in New York City, excellent health insurance, access to necessary medications (though far more than I’d like to take), and the financial ability to cover many of the medical expenses that my insurance doesn’t (such as obtaining monoclonal antibodies treatment when I had COVID-19 in January).

As sarcoidosis patients go, I’m quite blessed. And yet, I’m sicker than most. But I’m used to it — so much so that I sometimes forget my situation isn’t what many of my peers would consider “normal.”

It’s not normal to take thousands of pills a year.

It’s not normal to need a monthly infusion.

It’s not normal to have lung function tests every quarter.

It’s not normal to go to the eye doctor at least twice a year due to potential side effects.

It’s not normal to have your blood tested every quarter (though my blood tests used to be monthly, so there’s that).

It’s not normal to not know how you truly feel until your feet hit the floor each morning (assuming sarcoidosis hasn’t affected your ability to stand).

And it’s not normal to forget that all these things aren’t normal — unless you have a rare disease like sarcoidosis.

But all of this is normal for me, and for many other warriors like me. So, many years ago, I decided that I had to change my perception of “normal.”

For me, it is normal to run half-marathons (and soon a full marathon), even though my lungs shouldn’t be able to handle it.

It is normal to take several medications that can often lead to weight gain, but remain as active as possible.

It is normal to remember that I know my body better than anyone, including my truly fantastic doctors, so I have to trust my own judgment regarding what I can do.

And it is normal to support others on their sarcoidosis journey, especially my friends who don’t have the same access and privilege that I do.

That’s life with sarcoidosis, but I’m still in control. Yes, sometimes I hide in plain sight. But for me, that’s normal, too.

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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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