The Heartbreaking Choices You Make When You’re Chronically Ill

There’s nothing quite as heartbreaking as having to constantly make unpleasant choices for your health where both sides of the pros and cons list seem to even out – especially when you’re a (fairly) young person with your “entire life ahead of you.” **Doesn’t that feel like the worst phrase when you have health issues?**

I recently was asked an interesting question by a close colleague. He wondered if I was feeling better (since I had to take a health-related break), and I said “yes.” Then came the awful transition. “But,” I said with a long pause, “I am now dealing with how to secure getting my life-saving medication.” And he responded, “Well, it’s better than being sick right?”

And while I laughed, this question had me thinking.

Why do we, as people with chronic health conditions, have to even choose between such terrifying, anxiety-inducing states? Is one really better than the other?

Why do I get rejection letters and threatening phone calls from insurance companies and pharmacies about covering a life-saving treatment for a life-long condition? It sends me into a frenzy trying to contact people who might be able to help me, while spending hours on end with insurance agents who can’t seem to understand the sentence “I have a life-threatening, lifelong condition.”

Why, even with treatment, do I still fall so ill at times that I’m unable to do the dishes – let alone work and try to be financially secure?

Our choices are never easy, nor are they ones young people who are trying to make the most of their lives living with illness should have to make.

We have to choose between the life-saving medication, or experiencing long-term (sometimes life-long) side effects.

When I got a call from my doctor at 9 p.m. in 2015 telling me, a person who is severely immunocompromised, I had to take steroids or my diagnosis would “kill me,” I froze. And then, I wept until my body felt bone-dry.

I begrudgingly but religiously took them, and they miraculously allowed me to regain energy, walk my dog, and return to work.

They also weakened my bones to where I now have avascular necrosis in my left hip – otherwise known as death of bone tissue.

My hair became brittle and stopped growing.

Like many others who need to take steroids, I also experienced weight gain in places I usually never gained weight – 20 pounds, to be exact. I threw out all my button-up jeans, and said hello to stretchy pants and loose, extra-large shirts. People who I haven’t seen for a while often remark “Oh, I don’t even recognize you.” Another comment that feels like a dagger when you experience body changes due to medications.

Sometimes when I look at the before and after photos of starting steroids, my heart sinks, and my mind is in complete disbelief.

It might sound selfish to be complaining about side effects when these drugs allowed me to return to a somewhat normal life, but my goodness – what a price to pay.

These are the risks we take, and the decisions we have to make. If you have a chronic or rare illness, you have no choice but to do so. Sometimes I fear what I’m assuming will be a long road ahead, health-wise, but I often remind myself to slow down. I practice gratitude. It doesn’t take away the pain of having to choose between a rock and a hard place, but it does help to remember I’m not always facing a real challenge that might leave me on the brink of disaster. Sometimes, the decision is between where to eat out or go on vacation. And those are choices I’m thankful to still have.

Getty photo by Inner_Vision

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