Ways to cope when life with FA involves post-traumatic stress

The other day I was listening to a podcast. (I think I’m addicted to podcasts.) The interviewee had post-traumatic stress disorder (PTSD), though she preferred that it be called post-traumatic stress injury (PTSI) because she felt she was having a normal reaction to a horrendous trauma.

During my years with Friedreich’s ataxia (FA), I’ve experienced medical trauma, including getting a long-awaited, accurate diagnosis but then hearing, essentially, “Get ready for your short and miserable life.” Other traumas have included times when medical staff didn’t treat me because I was in a wheelchair or otherwise didn’t listen to my complex needs.

The idea of injury rather than disorder resonated with me because I believe I have post-traumatic issues, but they don’t reach the level of a disorder. Like the podcast interviewee, I feel I’m having a normal response to traumatic events. Disorder implies something is wrong with me, while injury suggests I was hurt by something. I also appreciate the idea that PTSI exists on a continuum; people can experience a variety of symptoms.

I’m a clinical social worker trying to explain, not diagnose. I’ve never been diagnosed with PTSD or PTSI. I experience some symptoms of PTSI, so I might be on the continuum, but I need a diagnosis from a licensed professional who’s not myself!

Recommended Reading

June 17, 2024 Columns by Jean Walsh

Medical trauma never goes away in life with chronic diseases

Some implications of trauma

Trauma doesn’t seem like it would have long-term effects, but it does. I used to think people just needed to go through the trauma, feel the pain that comes with it, and then move on. But it doesn’t work that way.

Unlike ordinary stress, PTSI lasts long after the initial threat is gone. (I’m using PTSI here as that’s my preference, even though PTSD is still more widely used.) Trauma symptoms can include intrusive memories, heightened arousal, avoidance behaviors, and negative changes in mood and thinking.

One symptom I have, though not the only one, is always wanting to avoid the doctor since part of me expects another horrible diagnosis. Aside from FA, I usually receive good or manageable diagnoses when I visit the doctor. But I’m always hyperaware that another bad one could come.

The effects of PTSI on the brain are significant and measurable. PTSI doesn’t mean a person is weak; instead, something physical is going on that results in behaviors and moods that are harmful and require help.

There’s no shame in taking care of our mental health the same way we do our physical health. Furthermore, I think it’s brave of us to see a professional who could help improve our life.

I hate reading about symptoms I might have but not about ideas to lessen them. So here are some suggestions, but a great starting point is always seeing a counselor first to determine if you have PTSI and, if so, what strategies might work for you.

Some coping strategies include relaxing, talking to others, focusing on positive activities, and learning about trauma. I’ve found meditation helpful. Exercise and spending time in nature also significantly improve my mood.

I’ve also discussed medical trauma with my counselor. With her help, I’ve developed personalized coping strategies. One of those is self-talk, so I don’t put off my doctor appointments.

How have you handled medical trauma? Please share your strategies in the comments below.

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.