Medical trauma never goes away in life with chronic diseases

Even after 42 years, I still remember the day a neurologist diagnosed me with Friedreich’s ataxia (FA). He told my parents and me that I had about 16 years to live and six years before I’d start using a wheelchair. Then he had me leave his office and told my parents that I’d probably become a substance abuser.

While none of those predictions came true, it was the worst day of my life. I was 19 and a college sophomore. On that beautiful fall day, my life was just starting, and I heard it was ending.

My family and I called it shock. But now I know that we were experiencing trauma. Medical trauma is a real thing.

The kindest healthcare practitioner with the best bedside manner might deliver your diagnosis. However, being diagnosed with a rare disease is life-altering and potentially life-threatening. Even with the best bedside manner, that kind of diagnosis can be traumatic for the patient and their loved ones.

In my case, the diagnosis wasn’t given with care to my and my family’s emotional well-being. In all fairness, it was 1981, and people, including medical professionals, didn’t think that receiving a life-altering or -ending diagnosis was traumatic.

It’s laughable to think of that attitude, given what we know today. Many medical professionals weren’t thinking about mental health at all, never mind the connection between mental and physical well-being.

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The trauma keeps happening when you have a chronic disease

FA is a chronic and degenerative disease. As of now, we have a treatment to slow the progression, but we have nothing to stop or cure the disease, so we keep experiencing loss after loss. That’s true for patients as well as their loved ones.

For me, it feels like I’m handling things, as I’m going along just fine. I tell myself, “You’re used to wondering if the new loss (having to use a pole to get up off the couch, for example, as I discussed in my column a few weeks ago) is indicative of a bad day or your new normal.” In this case, the loss isn’t fun, but I do plod along and get the support I need.

Two years ago, my primary care physician diagnosed me with high blood pressure and Hashimoto’s disease. Both could be related to FA, but we don’t know.

Medication controls both well; I didn’t need to panic. But I did. It felt like every YouTube video I could watch, every article I could read, and every lifestyle change I could make would improve my blood pressure and panic. I was hyperfocused on my blood pressure, which only escalated it. These diagnoses left me feeling further betrayed by my body.

I normally try to tell myself that my FA-worn body is doing the best it can with the resources it has. My body is not the enemy, FA is. High blood pressure and Hashimoto’s triggered feelings of being unsafe in my body. No matter where you go, there your body is. So there’s no peace when those feelings of betrayal arise.

Mental health providers often call the trauma associated with chronic illness enduring because of the relentlessness.

Medical trauma can trigger post-traumatic stress disorder (PTSD) or mood disorders. In the case of my blood pressure and Hashimoto’s scare, it triggered some depression and anxiety. I feel back to normal now. I think breathing exercises and talking myself out of catastrophizing helped me manage this bump.

As we approach National PTSD Awareness Day on June 27, I wanted to share my experience with medical trauma. I don’t have PTSD, but my enduring trauma does sometimes escalate into mood disorders.

One thing that’s helped me is something I once heard psychologist Dan Gottlieb say about mood disorders and disability among patients and their loved ones: Having a mental health crisis is a normal reaction to an abnormal situation. That is, if you don’t feel emotional distress at some point during your disease experience, something is likely wrong.

I’ve seen a counselor on and off over the years. I hope that if you’re experiencing trauma, you’re getting the help you need. Further, I hope you know it’s normal for someone with a chronic disease to experience trauma. If you’re currently in crisis, call or text the Suicide & Crisis Hotline at 988.

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.