Why I’ve decided to see a mental health counselor

Note: This column includes a mention of suicide. Resources for help are listed at the end.

I grew up with an unwritten rule that wasn’t taught by my parents but seemed to be what society expected: “Whatever difficulties you face, keep them to yourself. Everyone else has enough difficulties to face on their own.”

When I was diagnosed with Friedreich’s ataxia (FA) at 9 years old, this rule, which I’d thought was essential, suddenly seemed foreign. Over time, I didn’t know how I could keep my struggles — mainly, those with FA — to myself when they became more strenuous (and more obvious) every day.

My view of myself and my place in the world was lost, and I became a stranger to myself.

Recommended Reading

May 17, 2022 Columns by Sean Baumstark

How I Manage Mental Health With FA’s Progressive Nature in Mind

My negative experience with good counselors

In my younger years, I saw two counselors, and only briefly.

After I was diagnosed, my parents recognized the heavy burden of FA before I did, so they took me to see my first counselor, a child psychologist. I didn’t know she was a mental health counselor at the time. (I was brought to so many health specialists after my diagnosis that I stopped asking what each appointment was for.)

Even though she was a nice woman and I enjoyed solving the puzzles in “Highlights” with her, I stopped going to our sessions after a few months and never felt a need to return.

Did that mean she was a bad counselor?

I didn’t think I needed to see anyone for mental health, even as my FA symptoms became more severe. By senior year of high school, for instance, my participation in sports seemed ridiculous; I couldn’t navigate stairways without tightly gripping a handrail, and I kept holding on to walls, lockers, or anything sturdy to help me walk a straight path.

On my first day of college, I used a wheelchair for the first time. Although I handled that huge transition well, things changed after a few years of increased reliance on the chair, my growing frustration with not driving, and the final blow: my need for a shower chair when I could no longer stand there safely. I felt overwhelmed — depressed about my waning abilities and ostracized as my “normal” friends kept advancing physically while my body was declining.

I even experienced vague but recurrent suicidal ideation, though I now know it’s important to talk to someone about whether the feelings are a vague wish to die or they’re more specific, more like a plan. (Please reach out to a professional if you are having any such thoughts; see the information at the end of this column. The world is better with you in it.)

I started questioning the rule I’d claimed to live by. Should I never speak about my issues? I felt solidarity and vitality when others confided in me about their challenges. Maybe what was good for others was also good for me.

I set up a counseling session.

While I don’t remember much about my handful of sessions as a college sophomore, I recall the relief of expressing my frustration, anger, and sadness. I didn’t normally discuss these feelings about living with FA, so talking was a relief!

Yet I also remember believing that I could do everything the counselor suggested on my own, so I stopped going after a few sessions.

I believed that both the child psychologist and the college counselor were lacking. I planned to attend graduate school to become a good counselor.

During my first month of that study, I was struck by something my professor said: that the counselor’s goal was to put themselves out of a job by reinforcing clients’ coping mechanisms and self-confidence, so they don’t rely on their therapist forever.

I realized then that my child psychologist and college therapist were good counselors. They helped me build self-reliance.

Seeing a therapist … even now?

My life after graduate school consisted of searching and failing to find a job as a counselor.

Since then, I love working for BioNews, the parent company of Friedreich’s Ataxia News. Advancements in science have led to the first treatment for FA, Skyclarys (omaveloxolone), which was approved in the U.S. last year. Yet even with a job I love and a treatment for my disorder, FA still progresses a little more every day, which is a lot to deal with.

Even with a background in mental health, FA is a lot to deal with.

Even surrounded by love and support, and even with the goal of self-reliance, FA is a lot to deal with.

I recently signed in to a remote counseling session, part of a service I might’ve worked for had it been available back when I was looking for such jobs. I didn’t know what to expect from these continuing sessions, but I hoped they’d be a boon in my life.

My counselor appeared on screen, and our session began.

If you are struggling with thoughts of suicide, please contact the Suicide Prevention Lifeline in the U.S. (988, or 988lifeline.org, available 24/7) or Samaritans in the U.K (samaritans.org).

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.