How I Gradually Changed My Relationship With Medical PTSD

My rare disease experiences began when I was 8 years old, and it wasn't long after that I developed medical post-traumatic stress disorder (PTSD).

I changed from an outgoing, carefree, and social child to an isolated, fearful, rageful, mistrustful child – not only towards my loved ones but towards every medical provider I encountered. I won't go into the details of what led to my development of medical PTSD but rather how it has changed from childhood into middle adulthood.

What medical PTSD looks like

I became terrified of the potential for any physical pain. I remember needing to be restrained for lab draws and IVs even as a teenager, and even with multiple coping tools. My parents held my hand and rubbed my arm; I meditated and listened to calming music, all while sobbing and being held down.

Even now, I think I am prepared and able to calmly enter medical procedures or tests – and most of the time, I am – but there are still times when my mind flips at the last minute. I go back into that state of a traumatized, terrified little girl with no control over my reactions.

This was the case when I required a COVID-19 test prior to my last surgery. I had taken anti-anxiety medication before the swab, and I was managing alright until I was told to remove my mask. I completely lost it. I was no longer there. My child self was there and she was not having anything to do with this swab test.

I was unable to keep my head still. I began rocking back and forth, swaying my head and continuously stating, "I don't want to," while sobbing. My father was there and was attempting to hold my head in place, but ultimately, 2 nurses had to restrain me to complete the test. I screamed bloody murder the entire time. There was a child in a cubicle near mine and I knew I must be terrifying her, but I had no control over my PTSD response. The swab test wasn't even painful, but my mind didn't care.

Desensitization and addressing my fears

When I first began mental health counseling for my trauma as a teenager, one of the modalities was exposure therapy. With my needle fear, even looking at a needle was triggering for me. For years, I kept an orange in my fridge with the intention of sticking it with a needle to help desensitize myself to needles. The orange would spoil and I would replace it with another orange.

To this day, over 2 decades later, I have never brought myself to stick an orange with a needle. I have, however, been able to give my mother her insulin shots using a flex pen, and I have been able to start watching others undergo needle sticks. But I have yet to be able to watch myself stuck with a needle.

I was also unable to enter certain areas of my local hospital without experiencing panic attacks that left me reeling for days. Over time, I've become desensitized to these hospital areas as well.

What I learned about the doctor-patient relationship

It wasn't until my mid-teen years that I began to trust a few medical providers. Once I trusted someone, I held onto them for dear life, but it took time for a provider to gain my trust. And it's still that way, except now, I'm willing to meet new providers with an open mind (although that initial meeting is often fraught with a lot of anxiety on my part).

But now, when a provider is unable to gain my trust or breaks my trust, I can terminate that relationship and seek a different provider I feel comfortable with. Before, I was stuck with my providers regardless of how I felt or thought of them.

I can also use my voice to advocate for myself and confront a provider about my concerns and complaints. Before, I was cold and distant, full of hate and I showed it towards providers I didn't trust. I've been fortunate, though, that most providers have understood my mistrust and, especially as an adult, will work with me to help me feel comfortable.

The work is hard, but worth it

These changes haven't occurred on their own or just with time. Rather, through counseling beginning as a teenager and a lot of continuing effort on my part. I entered intense trauma therapy in 2022 with the determination to finally heal my trauma and have been determined to stop running from my trauma and my worst fears. I am not yet fully there in my healing, but I am progressing, and while the work is hard, I know it is worth it.

Have you seen changes in your emotional coping of medical experiences? What have you found helpful or not helpful? Please share with us in the comments below.