Medical PTSD Still Gives Me Nightmares

Lene Andersen survived a touch-and-go stint in the ICU, but the fear and anxiety she felt continued long after she returned home.

by Lene Andersen, MSW Patient Advocate

Every night for the past five years, I’ve had vivid nightmares about my life being in danger. The story varies (natural disasters, zombies, serial killers), but the theme remains the same: A terrible fate awaits me, a repeated assault on my body, mind, and soul. It is without fail absolutely terrifying. Five years makes for more than 1,800 nightmares and they are never the same, each presenting a new horrific scenario.

I have medical post-traumatic stress disorder (PTSD), and I am beginning to realize that it is chronic, just as my rheumatoid arthritis (RA). PTSD is a type of anxiety disorder that develops in some people who have experienced a traumatic event, particularly those who, for instance, have long-term exposure to a lot of stress and feelings of not being in control (hello, RA!). Unfortunately, it’s not commonly known that medical trauma can cause PTSD and it can have a profound effect on your quality of life. (A quick trigger warning that this column will discuss medical trauma.)

My PTSD happened after an intensive care unit (ICU) stay due to complications from the flu. I was on a ventilator for two weeks, then crashed when they took the tube out, which resulted in getting a tracheotomy for another two weeks. This all sounds very factual and calm, but in reality it was the scariest thing I have ever experienced. Well, not while I was on the ventilator—I was thoroughly sedated, but that led to another problem: hallucinations that interpreted procedures as assaults and which still seem like actual real memories to me, when I experienced them post-hospitalization. I later learned this is a common side effect of the meds they use to sedate you while ventilated.

Going home after this ordeal was wonderful and I thought I was fine, but it very quickly became clear that I wasn’t. That’s when the nightmares began. But despite having a host of follow-up appointments for my physical health, it took eight months before I could see a therapist who gave me an official diagnosis of PTSD. We got to work on processing the memories and feelings and finding ways to cope. At the end of five months, I was much better. Still, the nightmares persisted.

As you might imagine, given the similarity of my experience to what’s happened with people in hospitals for COVID-19 complications, this entire pandemic has been one relentless trigger after another for me. Trigger buttons include photos or video showing people on ventilators plus the fear of getting COVID-19 myself and ending up in the ICU again. This means that in addition to an uptick in the relentless nightmares, I also started experiencing a spike in anxiety, depression, and panic attacks. I have been terrified every day yet trying to keep living my life and it hasn’t been easy. Toward the end of last year, I signed up for therapy again and thankfully, it’s helping. I am still anxious and I still have nightmares, but the emotional sting is lessening.

After I started sharing my PTSD experience online, I found a lot of other people in the chronic illness community who share this condition and as the pandemic marches on, this includes people who have had severe cases of COVID-19. We also share other commonalities, such as no mental health follow-up after an ICU stay, a struggle to get diagnosed, and even thinking that these ongoing feelings were normal after a trauma. They aren’t. Nightmares and flashbacks are signs that you need help. I’ll share a few of the ways I’ve found my footing again and hope they might work for others in similar situations.

I talked about what happened. After I came home from the hospital, I asked friends and family who had been there when I was unconscious to tell me about those weeks from their point of view. It helped me feel less alone in what had happened and also made some of my confused memories/hallucinations make sense.

Studies have shown that if family and ICU staff keep diaries about what’s happening while you are in a coma, the facts can help pick apart those disturbing memories of for instance, being assaulted. Those conversations serve that purpose for me. Although I still have a memory of one of the nurses trying to kill me, but now I know that this is something my brain made up during the coma.

I saw a therapist. If you have nightmares, panic attacks, or other PTSD symptoms, talk to your doctor about getting a referral to therapy. I have tried cognitive processing therapy (CPT), specifically developed to treat PTSD and although it was hard work, the mix of education and processing thoughts and feelings was really effective.

Finding out that PTSD can be exacerbated by avoiding locations and thoughts connected to the traumatic incident means I am still careful to face my feelings to prevent them from taking over. As well, picking apart exactly what happened to put me in the ICU meant dismantling my overwhelming feelings of guilt for what I’d put my family through.

I worked on stress management. Throughout the last five years, I have discovered that stress and feeling as if something or someone else is in control of my life are surefire triggers for my PTSD symptoms. It’s vital for me to deal with and reduce stress through a healthy sleep routine, eating a balanced diet, and actively reducing stressors. I schedule deadlines, doctors’ appointments, and other events so I have time to rest and regroup before the next one hits.

Mindfulness practice and meditation have also been great tools for lowering stress levels and I increase my practice of these during periods of stress.

I stopped ignoring and started acknowledging my PTSD. I found power in facing the fact that I have PTSD and in forgiving myself for not being able to sail unscathed through a frightening and life-threatening event. Being honest with my family and friends about how I feel and how they can help has also been important.

As well, being open about my experience by talking and writing about it has been empowering, both for me and those others I have met who had been living with the symptoms in silence. Awareness and advocacy work for RA and they work for PTSD, too.

Five years after I first experienced PTSD symptoms, I am better. I have gotten used to the nightly scary dreams and I have found empowerment and support with others who have had the same experience. I treat my PTSD in the same way that I treat my RA—it’s part of my life, but it is not the totality of my life.

That said, I’m still really looking forward to the pandemic being over so I’m not triggered every damn day. I know my PTSD won’t magically be cured when the pandemic is over—this is something that will be with me for the rest of my life. But without the constant barrage of horrible news, maybe I can get back to a point where it simmers quietly in the background instead of being always present.

Lene  Andersen, MSW
Meet Our Writer
Lene Andersen, MSW

Lene Andersen is an author, health and disability advocate, and photographer living in Toronto. Lene (pronounced Lena) has lived with rheumatoid arthritis since she was four years old and uses her experience to help others with chronic illness. She has written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Lene serves on HealthCentral's Health Advocates Advisory Board, and is a Social Ambassador for the RAHealthCentral on Facebook page, facebook.com/rahealthcentral. She is also one of HealthCentral's Live Bold, Live Now heroes — watch her incredible journey of living with RA.