Guest Voice: After years of struggling, clinical studies gave me purpose

I recently participated in a clinical study for chronic pain and depression. For several weeks, I answered surveys about my mental health and my willingness to stay alive. The irony of living with post-surgical hypoparathyroidism is that every day I look for strategies to feel better and to stay alive, not give up.

This has led me to think that after I pass away, no one will ever know the extent of the work I have contributed over the years through clinical studies, survey work, and Zoom calls. Not even me, because it’s all anonymous. Why is this important to me? Why do I enjoy anonymity so much?

Polite society is full of glazed-over pleasantries. People outside the rare disease community seem to get uncomfortable hearing about traumatic life events. Equally, inauthentic small talk makes me feel uncomfortable.

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Bottoming out

I was a small business entrepreneur for 28 years, and for 21 of those years, I had a rare disease diagnosis. It was an excruciating experience. Every day, customers would say, “Hi, how are you? Good to see you.”

For years, day in and day out, I would say the same thing, ”I’m good. How are you? How may I help you?” All while feeling symptomatic and broken on the inside. I was the one who needed help.

I tried my hardest to appear normal and keep my ailments to myself. My business was wildly popular, but my interactions were superficial.

I was struggling. I was in pain, and I felt horribly misunderstood. I hated every minute of every day seeing chipper people who were happy to be alive. I could never tell anyone how I really felt because I would sound like a hypochondriac. I appeared fine, and running a business was naturally exhausting. So nothing seemed out of the ordinary.

But I had no quality of life at work or at home. My pain, fatigue, and multiple mystery symptoms were paramount. I would lie down on the couch, my eyes would close, then open, and I’d be right back to it again. I was completely miserable.

Along with my ever-changing symptoms, I struggled with alcohol addiction for 22 years. I finally chose sobriety and started seeing a psychologist. I thought sobriety would fix my problems, but alcohol had apparently been my social lubricant. Sobriety, combined with the recall of my parathyroid hormone replacement, Natpara, and the onset of perimenopause, created my perfect storm. I could no longer mask my pain or hold my tongue.

After drowning my pain in alcohol for decades, sobriety seemed to let that pain spill out of me in a horrible rage. This behavior didn’t go over well, especially in a small, rural town. After 28 years, my business closed. This hurt me deeply on so many levels. The community I grew up in had shunned me. I chose to isolate myself. I even turned to another community whenever I needed anything.

Becoming the change I wanted to see

My self-care journey began with accepting what I had done. I continued counseling and maintaining sobriety. I began participating in clinical studies, surveys, and Zoom calls. Since I was anonymous, there were no wrong answers. No critics. No judgment. It felt good to be medically interesting to the researchers.

I needed someone to be interested in what ailed me, and I needed interaction. I could finally be an open book about my rare disease. It was like having friends without a real connection or any lasting commitments.

These opportunities filled something in me that had been missing. For short intervals, I could talk about details I couldn’t share with anyone else. Having a rare disease is so lonely. It feels like no one wants to hear about problems. But I’ve since realized that it’s not that they don’t care; they simply cannot relate.

Since receiving my rare disease diagnosis, I consider it my duty to help others who are struggling. I participate whenever I can. I qualify for some studies but not others. These surveys are important, not only for the study’s results, but also for the individuals who participate.

This has given me a voice, a purpose, and a sense of pride, especially after feeling like an irreparable human being. I am finally becoming the change I wanted to see.

I strongly encourage anyone who feels the need to get involved to join a platform such as Rare Patient Voice or the Rare Foundation, or to look for volunteer opportunities within their own patient organizations.

There is a deeper purpose for us. These surveys and studies help add meaning and value to our lives. Sometimes this work means so much more than just the printed results.

To submit your own Guest Voice for publication on Hypoparathyroidism News, please email your idea to our community editorial manager at [email protected] with the following included in the subject line: “Guest Voice: Hypoparathyroidism News.”

Note: Hypoparathyroidism News is a strictly 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 another 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 Hypoparathyroidism News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hypoparathyroidism.