Lessons learned from living with a disability for a decade

[Joachim]

Ten years ago this month, I was devastated to leave a job I loved — one I thought would be the beginning of my career, not the end of it. It was a dream job, so losing it was a nightmare.

I’d practically done the job for free already. I was a volunteer for a nonprofit organization and became the event chair for its newest overnight fundraiser. I had a full-time job already, but spent just as much time working to make my event the best it could be.

For the next few years, I lived and breathed that event. I spent the whole year prepping and planning. Every day, I wore or used event-branded items. I even joined social media as a way to promote it.

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When I found out that my local office was looking for an event manager, it seemed like kismet. When I was hired, I was overjoyed. I loved my job. I loved my volunteers. I loved my events. But it was a lot: 12-hour days with evening and weekend meetings, all in preparation for 24-hour events.

That was before I was diagnosed with sarcoidosis, but long after my undiagnosed symptoms began. My doctors agreed that something was wrong, but they didn’t know what it was. Still, I struggled with pain, fatigue, dizziness, and more. That made the long hours harder to get through, and my post-event recovery took longer each time. Without a diagnosis, it was hard to get accommodations — or understanding.

I was forced to admit that my job was too physically demanding and I couldn’t keep up anymore. I hoped to get a less physically demanding position within the organization, but it was going through a restructuring phase, and the new structure didn’t have room for me.

Still, I was in denial about living with a disability. I hoped I could find a job somewhere else; I just needed one that let me work in my way, on my time, at my pace, and from my own home. That might be manageable with an employer who knew me and my work ethic. But it’s a lot more difficult to walk into an interview asking for time off for frequent medical appointments, a flexible schedule, and the ability to work from home when symptoms flare.

After six months of job searching, I had to concede. To paraphrase a favorite line from “Joe Versus the Volcano,” I knew I could get the job, but I couldn’t do the job. This was a foreign concept to me and made me feel like a failure.

Looking back

When I first became known as “Buttahfly,” my metamorphosis stemmed from weight loss and a healthier body and mindset. Ironically, I’ve since been diagnosed with several chronic illnesses and gained the weight back as a side effect of steroid treatments. Still, I’ve transformed again and come out stronger, wiser, and mentally healthier than I’ve ever been.

Looking back, I almost can’t believe I felt so low when I had to stop working. Almost. I understand where it came from, though. Society has repeatedly told us that our worth is based on our productivity; anyone who is unemployed or unable is therefore worth less. Thankfully, time (and therapy) have shown me how wrong that type of thinking is.

Lessons learned

I’ve learned so much over the years — about diseases, treatments, advocacy, and organizations. I’ve learned about life. Most importantly, I’ve learned about myself, which has enabled me to adapt and transform, to be the best person and live the best life that I can.

I have never thought less of anyone else because of unemployment or disability. But I tend to hold myself to impossible standards, and then I fall short. It’s been a challenge to think of myself as “enough” just as I am, but I am putting in the work to make myself believe it. One trick I have is that every time I tell someone else that they matter just as they are, I am telling myself, too. (If you’re reading this, you matter!)

I’ve learned that we have the power to make decisions about our healthcare. We’ve got to trust our instincts. If we feel that something is wrong, then we must ensure that it’s addressed. We can choose to change doctors or treatments if we are not satisfied.

Living with sarcoidosis, or any disability, can be overwhelming. With so many medical appointments, symptoms, and treatments, it can feel like this disease is our entire life. It’s crucial that we find even the simplest ways to add “life” to our lives. Whether that means taking up a hobby, going on a vacation, or having a monthly date night, these moments remind us that we are more than our disease, and we can still experience joy.

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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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