Scheduling my own doctors’ appointments was one of the biggest indications I was getting older. I remember how I felt when I first did it about age 18. I hung up the phone feeling so grown.
From then on, I had no problem scheduling all my appointments. It gave me a sense of independence that I had been craving. But earlier this year, I realized that medical appointments were making me anxious. I think it has to do with my diagnosis of Friedreich’s ataxia (FA) four years ago.
Before I was diagnosed, I couldn’t explain why my legs weren’t working. I would tell my friends I had been drinking, or that “for some reason, my legs are not listening to my brain.” I would awkwardly laugh it off. I always knew something was wrong, but I couldn’t put it together.
I remember telling my mom repeatedly that something didn’t feel right. I felt off. And scared. I was terrified not knowing what was going on inside my body. As my family and I set out on my diagnostic journey, our biggest fears became reality when FA was introduced into our lives.
That was the last time I scheduled a doctor’s appointment for myself.
Although I kept up with a neurologist, Susan Perlman, for clinical trial appointments, I stopped making an effort with my other doctors. I felt an immense wave of fear whenever I was asked about my next appointment, and I didn’t understand why.
A few months ago, I spoke to friends about procrastinating when it comes to making doctors’ appointments. They understood right away. One friend said she has a hard time making appointments. “It seems silly, but it’s a huge trigger. I have like four appointments I need to schedule but I just keep putting it off. Are you ever like that?”
I was shocked by her question because it perfectly described what I was going through at that moment. I told her I was doing the same thing. “I’m scared to see a doctor before I leave for Italy in case something else is wrong,” I said. “Last time I got examined after I felt something wrong, I was diagnosed with FA, so I know exactly what you mean.”
It was as if my emotions were justified by others confirming they felt the same way. Self-reflection with anxiety is stressful enough. I know that contributed to the negative thoughts I was having about myself.
Writing this column led me to make a doctor’s appointment. I asked my mom to come with me for extra motivation and support — and to make sure I don’t bail. I hope to write another column soon with an update that I have seen all the doctors on my list.
Have you ever experienced this? Do you have any tips? Please share your experiences in the comments below.
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.
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