This summer I was diagnosed with PTSD relating to past medical experiences. I’ve been slowly learning more about PTSD over the last several months. I’ve found that learning about new conditions is always the first step to living well with them. But man has this one been hard, both to learn about and to live well with. I thought it might be helpful to share some of my experiences in case others are dealing with similar struggles.
The biggest cause of my PTSD stems from my experiences of getting sick with something seemingly acute and then never getting better. It’s happened to me more than once. An experience like that can mess up your brain. Several experiences like that are pretty hard to forget.
The most likely reason for me to get sick with something acute and never get better is an autoimmune response. Certain viruses can set off a cascade of long term symptoms in people who are prone to these autoimmune type responses. For instance growing up there were a few times I got stomach bugs and recovered just fine, but when I was 22 I got a stomach bug that set off my IBS, which I’ve now been dealing with for 11 years with no end in sight. It’s safe to say IBS has been a chronic problem for me, and not unreasonable to assume it will be lifelong, short of new and as of yet unknown medical interventions. An infection also set off my POTS, and a later infection significantly worsened my POTS.
Given that history I think most people would have some apprehension around getting sick with anything new, but my experience seems to cross over into a pathological response of its own in the form of severe anxiety. The Mayo Clinic lists 4 main categories of PTSD symptoms. They are intrusive memories, avoidance, changes in thinking and mood, and changes in physical and emotional reactions.
I experience intrusive memories often. Mostly this happens at night when I can’t sleep and I go through my memories of my worst medical adventures in great detail. It’s as if I were trying to tell someone the story of what has happened to me, except there is no one on the other end to hear it. Sometimes it feels like I’m practicing facing those experiences, like it might be a positive thing to practice. But should I really be losing sleep to do that? And it's not the type of thing that I actively chose to do. Most often I just find myself reliving something and halfway through think to myself, “why are you doing this?”
Avoidance is fairly obvious in the case of acute illnesses. I’m scared of getting sick. If someone has symptoms I don’t want to be around them. In the years since COVID started I haven’t wanted to be around anyone who wasn’t being cautious. If you have sick kids I’m too nervous to be around your family. I tend to avoid large gatherings when possible and I’ve become pretty neurotic about food safety. If I’m at a party and there is finger food I will eat first and then not touch the food later on because everyone else’s hands have been in it. And if it’s a bad anxiety day I might just skip the food at the party entirely and eat something when I get home. The result of failing to use these avoidance strategies is often a panic attack, or at the very least extremely heightened anxiety. And because I know about incubation periods, that anxiety will often stay heightened for several days to a week.
Changes in thinking and mood mostly show up in my case as feeling hopeless about the future or being sure that bad things are going to happen to me. Since I don’t know what will set me off, the only option for me right now feels like avoiding everything, but it often feels impossible to avoid all acute illnesses. Of course I know that I will fail at that eventually, how could I not? And so I feel hopeless and scared often.
Changes in physical and emotional reactions have really become more pronounced for me since COVID began. If I’m inside and I hear someone cough I cannot ignore it. I notice every single cough. This can be an overwhelming amount of information to process if I’m at a grocery store or another place with a high density of people. It can feel like I’m being attacked from all sides by tiny invisible pathogens. Intellectually I know that there are lots of reasons for a person to cough that aren’t contagious but that doesn’t help my knee jerk reaction of fear.
Just the other day I was at an outdoor event with maybe a dozen people. Someone coughed several feet away from me and I immediately experienced a fight or flight response. There was no thought process to it, it just happened. My body went all hot and then cold, my heart rate increased, I started looking around to find someplace safer to move to. Meanwhile that person who coughed was probably just choking on some water or something but knowing that to be the most likely cause doesn’t stop the immediate and automatic physical reaction I have.
The hardest part of all of this is that some amount of fear of getting ill is natural and good. Humans are supposed to have an instinct for avoiding things that can kill us. My psychiatrist has told me that the PTSD is most likely from the fact that I was already a very anxious person and then I was given real reasons to be afraid. And that makes fighting my fears all the more difficult because it’s not clear cut. I shouldn’t be having panic symptoms whenever someone coughs but at the same time, as a chronically ill person, it is good and right for me to practice a reasonable amount of caution. I’m dealing in shades of gray here, not black and white. My body isn’t responding wrong, it’s just responding too strongly for what the situation merits.
I plan to continue to learn about PTSD and hopefully learn ways to manage my symptoms. For now it’s helpful to have the diagnosis so that I know there’s a reason I respond to things differently than my peers. Have you experienced medical PTSD? What things have you found to help manage those symptoms and fears?
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