I Have PTSD, But You Wouldn't Know If You Met Me

by Rachel Garlinghouse
Originally Published: 

Last week, I took to social media, fed up with all things Covid. I composed a heartfelt, honest post about my personal struggle with people who have no issue discounting Covid precautions and living their best lives, meanwhile those of us who are immunocompromised or caring for those who are carry the load of this pandemic. I feel for our healthcare workers who have got to be traumatized and exhausted. In this same post, which I posted to both my private and public pages, I shared that I have PTSD from over fifteen years of medical trauma.

I didn’t set out to share that I live with PTSD. In fact, I’ve dealt with it for years, mainly calling it my medical anxiety. Truly, I thought I was only dealing with medical anxiety — until I met my therapist and in our first session told her the truth. Perhaps my “white coat syndrome” is so much more. I’d researched PTSD, and I certainly think I have it. That moment was freeing. After all, naming the problem is half the battle.

If you were to meet me, you would have no idea I live with PTSD. Even if I told you my story, you may just think, as many do, that I’m strong and brave. People tell me all the time that I am so courageous and positive. These things are true. I’m not living a lie or pretending to be something I’m not. But there’s bad with the good. I am exhausted. I am traumatized. I am haunted.

Over fifteen years ago, I was in the emergency room, breathless and shaking. I’d been sick for almost a year and a half, having seen five medical professionals. My symptoms ranged from being constantly hungry and thirsty, losing a lot of weight without trying, chronic fatigue, depression, numbness and tingling in my hands and feet, weakness, and blurry vision. One doctor, exasperated with my ongoing sinus infections and weight loss, claimed I was a hypochondriac and anorexic. Basically, my symptoms must have been my fault and in my control. He was wrong — very wrong.

The emergency room nurses drew vial and after vial of blood from my arm and covered me in warm blankets. Then I got my answer. The doctor came in, his eyes wide as he read over my blood work results, and told me he had an answer. I’d been very sick because I was an undiagnosed type 1 diabetic. Minutes later, I was rolled into the ICU and put on an insulin drip. I was very, very lucky to be alive. I was in a state called diabetic ketoacidosis. My body was toxic and shutting down.

You’d think one life-altering disease is enough, but apparently not. Eleven years later, I found a lump in my breast. An ultrasound and mammogram showed nothing of concern. Of course I was relieved, but in the following days, I had a nagging feeling that something wasn’t right. I sought a second opinion. The doctor agreed to do a biopsy. A few weeks later, I was diagnosed with breast cancer.

In the months that followed, I had an MRI, genetic testing, and multiple appointments. I chose to have a bilateral, direct-to-implant mastectomy. During my recovery, I met with oncology and radiology where it was determined that my cancer was caught early enough and more treatment wasn’t needed. I was relieved, of course, to be a survivor. However, when the appointments slowed down and normalcy returned, PTSD showed up. I was anxious all of the time.

I worked very hard on my medical trauma in therapy and also learned to meditate. I exercised, ate healthy, got outside often, and went to all my follow up appointments. I relented to taking anti-anxiety medication, but it made me tired, even in a small dose. However, I didn’t give up. I journaled, kept going to therapy, and read books on trauma so I could understand how my brain and body chemistry had been changed by my experience. I learned that I was wired to stay in fight mode almost all the time.

As if these experiences weren’t enough, this year, I was diagnosed with breast cancer again. I’ve undergone three surgeries, twelve rounds of chemotherapy, and now, thirty-three rounds of radiation.

I have a very hard time staying present. I obsess over medical test results and go down the research rabbit hole quite easily. My heart drops every time I get a call from a medical office. I remember every anniversary, from the day I was diagnosed with cancer and diabetes, to surgery dates. I feel stuck in a revolving door of terror.

Living with PTSD isn’t what many people think. I can make coffee, cart my kids around in the minivan, and work — but the trauma is always there. I fight it every single day, not always consciously. Trauma can be triggered in many ways, from a song on the radio to the smell of something sterile. I remember feeling triggered by visiting the dentist, my chair reclined to look at the white, paneled ceiling and too-bright fluorescent lighting — a view I had during one of my breast cancer surgeries. When COVID first hit, I couldn’t leave my house. Seeing the public in masks reminded me too much of feeling helpless on an operating table while I waited to fall asleep, masked medical professionals hovering over my body.

I could have just put on a brave face, but frankly, those things are exhausting. PTSD isn’t all of me, though it is certainly significant. I’m learning to confront it in new ways, including EMDR—a special type of therapy to help traumatized people reprocess their traumatic memories. Choosing to do EMDR takes bravery — a quality I certainly have.

You can’t look at someone and know what they’ve faced. PTSD doesn’t always look a certain way, and it doesn’t solely belong to only a particular group of people, like combat veterans. PTSD also doesn’t show up in the same way for everyone. For example, I don’t have nightmares. PTSD is a unique beast, one that anyone who has faced trauma in their life should be aware of. I’m thankful that my trauma isn’t a lost cause. I am confident that the path I’m on will lead to significant healing.

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