Redefining What ‘Normal’ Looks Like for Someone With Sarcoidosis

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by Calvin Harris |

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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.


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.

Comments

Cecilia Pietersen avatar

Cecilia Pietersen

Good day sarcoidosis family

I am from Cape Town South Africa and have pulmonary sarcoidosis for past 35+ years. It has affected my eyes as well. I cope with this daily. Some days better than other days still a struggle. By God's grace I cope.
Be blessed
Cecilia

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Calvin Harris avatar

Calvin Harris

Thank You Cecelia! I was able to visit your beautiful city a number of years ago. All the best to you!

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Janet avatar

Janet

I was diagnosed with pulmonary sarcoidosis 17 years ago, have been very lucky as it seems to have been in remission but now I am having eye difficulties, balance issues and am extremely tired. My problem is I need to see a specialist because my specialist moved into a different area of practice and she has said I need to to see a specialist in the next city . My GP has revered me a year ago with no response. How do I get help?

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Calvin Harris avatar

Calvin Harris

Hi Janet! Ideally your former specialist would’ve given you a new recommendation. That’s been my prior experience. Short of that, I might suggest organizations like FSR. Unfortunately in that case, you might need a new referral. All the best!

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kimberly reese avatar

kimberly reese

I agree with this article it takes a lot out of you

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Calvin Harris avatar

Calvin Harris

It does!! Thank you Kimberly

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Brenda avatar

Brenda

I am having a hard time accepting this. First started with pain walking in one ankle in 2011. Surgery. Still hurt. Helped but still. Then? Iritis/Uveitis came in without any warning and has plagued me from 2014 to today. Had cataract surgery on both eyes in 2020. Helped a lot and was free of uveitis until 2 months ago when my doctors decided to wean me off prednisone. Tried infliximab and something else. Built up antibodies. Then? Meningitis in 2016. Then and now. Lymph node involvement, pain, severe tingling, sharp knifelike pains all over my arms and legs and body. My vision is blurred again. Not sure where to go from here. It’s really distressing to be “needy”. I am a “fixer” not a broken woman. I feel like such a burden to my husband and family who because of COVID, would not even allow their kids or themselves to come visit which distressed me even more. Getting in the sun for ANY amount of time causes a massive flare up, even just walking from my house to the car, about 40 feet away. I can barely walk due to the pain. My spine hurts. MY ONLY QUESTION: is there any hope I will wake up and day and this insidious whatever it is will be gone like it was before I was 57 and my world got turned upside down?

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Calvin Harris avatar

Calvin Harris

Hi Brenda! I appreciate your comments, and I’m so sorry to hear how challenging it is. At the risk of sounding cliche, I think there is always Hope, and admittedly I have to often remind myself of this. But with chronic disease sometimes it does feel never-ending. For what it’s worth, I find it helpful (sometimes necessary) to lean on others, even when I do feel like a burden. In those cases, it’s their strength that keeps me going. I’m rooting for you and wish you all the best!!

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