Finding Reason When Living With a Rare Disease

Matthew Lafleur avatar

by Matthew Lafleur |

Share this article:

Share article via email
living with a rare disease | Friedreich's Ataxia News | main graphic for column titled

“So I guess the old saying ‘everything happens for a reason’ is true,” my friend and supervisor Brittany Foster said, ending her presentation. I’m still thinking about her words a month later, as I noted in my last column.

We were in the middle of a “culture meeting” with a potential hire at BioNews, the parent company of Friedreich’s Ataxia News. We have these meetings with potential hires and new employees to highlight our company culture. Broadly, BioNews exists to enlighten, inform, and empower those living with rare diseases, so hearing directly from two rare disease patients is vital.

With that line, Britt wrapped up the first part of the culture meeting. Before that, she’d explained how pulmonary hypertension had forced her to retire from a beloved teaching career at the age of 26, thus leading her to share about her disorder and the mental health challenges it brings about. She was then recruited as a columnist for Pulmonary Hypertension News and eventually promoted to human resources manager at BioNews.

Recommended Reading
GAA repeat | Friedreich's Ataxia News | illustration of DNA strand

DNA Repeat ‘Stop Sign’ May Be FA Therapeutic Target

While the claim that “everything happens for a reason” usually makes me uncomfortable, I put my discomfort aside and launched into my story of how a Friedreich’s ataxia (FA) diagnosis led me to full-time employment as culture coordinator at BioNews.

No one in my family or otherwise close to me had heard of Friedreich’s ataxia when I was diagnosed with it years ago. FA completely disrupted my identity; without playing sports, running, navigating stairs, or just being able to walk in a straight line, I didn’t know who I was or how I would endure my new reality.

Eventually, by the time I started college, I needed to use a wheelchair. By my junior year, I needed a shower chair.

Yet, in my mind, rather than demonstrating solidarity, most people told me “everything happens for a reason.” It felt like a bad message from a fortune cookie. I felt abandoned and grew to hate the saying.

I also didn’t think there was any point in getting involved with the FA community, because to me, FA was a detestable cross I had to bear, something vile that happened only to me for some such “reason.” So instead of learning from it or finding solace in others who faced a similar situation, I selfishly kept my head down and focused on just getting by.

I threw myself into my schoolwork and graduated with a bachelor’s degree in English and creative writing. Then I received a master’s degree in mental health counseling.

Yet despite my attempts to ignore FA, it continued to do its thing, and my symptoms progressed, my normally deep voice became muddled, and my fine motor skills dwindled.

I went to interview after interview seeking a counseling job, and even moved to three different cities to find work. I never found one and blamed my handicapped body for preventing me from driving and speaking clearly. I couldn’t even navigate my wheelchair very well.

Because of all of this, I slowly began to realize that FA wasn’t something abstract that had happened just to me. It is a wonky part of my genetic code — part of me.

Eventually, I began seeking out information about FA rather than viewing it as some kind of roadblock. I became more involved in the FA community and found not only great friends, but also a sense of purpose. I no longer felt like a victim whose life was beyond his control. If I wanted a miracle, I’d have to work toward achieving it.

Today, I write about my life with FA on this website, and I get to work as a culture coordinator to empower others in the rare disease world. For me, it’s a perfect combination of creative writing and counseling.

In the meeting I mentioned at the beginning of this column, I ended my story at this point. I think it’s impossible for us to know if everything happens for a reason or if it’s all random. But no matter what we face — a challenging diagnosis, the death of a loved one, an unexpected breakup or job loss — one thing seems true: It’s up to us to find a meaning for and assign a reason to whatever happens to us, wonky genes and all.


Note: Friedreich’s Ataxia 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 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 Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.

Comments

Leave a comment

Fill in the required fields to post. Your email address will not be published.