Discovering a Different Kind of Strength With Sarcoidosis

I was recently scrolling through my Instagram feed when I saw a post from another sarcoidosis advocate that struck me. It was a simple video showing her with the text “1974” and a caption that read, “Starting today I’m 48 years old for only 48 more days. I’m entering and fully embracing the last year of my 40s. Shout out to my fellow GenXers. Check in below!”

Without hesitation, I immediately replied, “Gen X in the house!! 48 in less than a week, but (despite illness & disability) in many ways, stronger & more confident than I was at half that. This is our time.”

Before I hit enter, I reread what I’d written. I was looking for typos, but what I found was a revelation. Did I really just say that? Did I really mean that? Do I really feel that? I must, because I said it without even thinking.

It was almost a Freudian slip, but not an embarrassing one. I didn’t fully realize that’s how I felt, but I’m glad to know I do, at least subconsciously. I was so surprised to learn this about myself that I had to examine the idea further.

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“Despite illness & disability,” I wrote — and in parentheses, no less, as though they were just a minor aside and not the dominating theme of my existence. Sarcoidosis and other chronic illnesses have taken away my ability to work a full-time job, walk without a mobility aid, socialize the way I’d like, and simply exist without pain, fatigue, and shortness of breath. Nearly everything I do stems from illness and disability, as I write, advocate, and support the chronic illness community and spend my spare time at hospitals and doctors’ offices or on the phone with pharmacies and insurance companies.

When I think back to me at age 24, I thought my biggest problem was that I was overweight, but after recovering from an eating disorder, I was learning to live with that. I’d had problems with headaches, irritable bowel syndrome, ulcers, endometriosis, and frequent ovarian cysts, but I still didn’t think of myself as sick. I was engaged to the love of my life, working a job I adored, and spending as much time as possible with friends and family, and friends who became family.

Fast forward to today, and things are so different. It’s not the aging that bothers me (even as I feel older than 48), but that my body has gone through so many other changes since then. Though I’d reached a healthy weight while still in my mid-20s, years on steroids caused me to gain all the weight I’d lost and more. (I also attribute my twice-broken foot to the steroids, as the combination of weight gain and fragile bones is a recipe for disaster.) I’ve become so much more dependent on others, which leads to the insecurity of feeling like a burden to them. I feel so weak; how could I possibly say that I’m “stronger & more confident”?

The search for an answer brought me back to the beginning, to the idea of becoming a butterfly (or in my case, Buttahfly). I have learned what I want from my medical providers and treatments, and I decide how, and with whom, to spend my limited energy. I’ve become a strong advocate for the sarcoidosis (and greater chronic illness) community and, in doing so, for myself as well. This community has become family in my heart — even more than most blood relatives.

The question that remains is how did I make that transformation? What weighed me down like a slow caterpillar, and what did I have to give up?

It took many negative experiences to learn what I really needed and what I was willing to accept. There were doctors who didn’t listen, didn’t believe me, or didn’t want to admit what they didn’t know. There were people who made me feel like I was more trouble than I was worth. There were organizations that were only interested in what more I could do for them, with no consideration for my needs and limitations as a person living with multiple chronic illnesses.

The worse I felt from each of those experiences, the more I learned about myself. I began to do my own research, ask more questions, and find new doctors when I was dissatisfied with the old ones. It was liberating. I stopped wasting time and effort trying to prove that I was good enough to people who didn’t care anyway. I found my community — people who appreciate and respect me for who I am now, and not for who I used to be or what I can do for them — and they have given me the confidence to spread my wings and fly.

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.