Chronic Illness Makes Me Feel Like I’m Aging Prematurely

The other day I picked up my new glasses — a pair of bifocals, because my doctor said that progressive lenses would worsen my dizziness and vertigo. The same day, I was discharged from physical therapy because my insurance company didn’t see enough progress. Since every other treatment has failed (or been denied), my next step is likely a hip replacement. With that combination of events, there’s no denying it: I’m officially old.

But I’m not, really. I’m 47. I suppose “old” is a relative term: When I was young, I thought nearing 50 was old; now, I imagine decades ahead of me. What I’ve been saying for the past 10 years, as symptoms of sarcoidosis and other illnesses have taken hold, is, “I’m too young to be this old.”

Chronic illness can have a way of aging us prematurely. I’ve joked that while many people dread turning into their parents as they get older, I’ve skipped over my mom to become my grandmother. I hear her voice when I cry, “Oy vey!” as I attempt to stand, and I think of her as my joints snap, crackle, and pop. She was a phenomenal woman in myriad ways, but this is not how I want to be like her.

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It happens with memory, too. We often refer to this as brain fog, and some call it a “senior moment.” It’s more than just forgetting a date on the calendar or an item on our to-do list. We can forget what we’re saying — even while we’re saying it. I once asked my mother, “Was I just about to say something else, or did I already say something else?” And of course, I couldn’t remember what else I’d meant to say.

What frustrates me most is when there’s a word I can’t recall. It’s usually a common word; I know the meaning and can almost describe it, but my brain can’t quite get there. It’s similar to the way my mom describes a movie: “You know, the one with that guy from that other show.” When I lose a word like that, it worries me because because aphasia is a symptom of neurosarcoidosis, as well as many other brain conditions.

As much as I hate what sarcoidosis is doing to my body, it upsets me on a different level when it affects my thought process. A proud nerd, I’ve always been known for my brain. I was reading at 2, in college at 16, teaching from my teens through my early 30s, and now, I’m a writer and patient advocate. I’ve lost so much of who I thought I was due to disease and disability, but losing my ability to communicate would mean I couldn’t write, teach, or advocate anymore. And without that, I don’t know who I’d be.

Of course, tips and tricks can help us remember the things that matter. And whenever I log on to Facebook (which, let’s be honest, is every day), I’m reminded of the things I’ve done, the places I’ve gone, and the people I saw “on this day” years ago.

Just the other day, in fact, Facebook reminded me that I became known as the “Buttahfly” after a period of inner and outer transformation and started my first team of “Buttahflies” for a walkathon 20 years ago. It sent me joyfully down memory lane as I thought about the people who have joined me over the years and the health-related events we’ve participated in, fundraised for, and even created from scratch. The way I’ve participated and led my teams has changed as I’ve navigated this ever-transforming body, but the heart part was always there, and always will be.

Another memory Facebook showed me was one I’d shared a few years earlier, and today I shared it once again. Inspired by Thanksgiving, I’ve participated in gratitude challenges, where I post every day in November about something I’m thankful for. While it’s always worthwhile to not only feel but to express our gratitude, it can be even more powerful when we’re not in the greatest head space. Even something as simple as “I’m grateful for my coffee this morning” can be uplifting.

So that’s where I am today: older than I should be, struggling with symptoms, but grateful.

I’m grateful for the people in my life who love and care about me and are glad to have me in their lives. I’m grateful for the medical team that works to understand me, as well as the treatments that help to mitigate my symptoms. I’m grateful for the organizations that support people living with diseases like sarcoidosis. I’m grateful for my chronic illness family, who share my hopes, fears, and experiences and understand what this life is like. And I’m grateful for this column, which allows me to connect with you.

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.