My Traumas Associated With Follicular Lymphoma

Karen Cohn is a retired middle school special education teacher who was diagnosed with follicular lymphoma in July 2020. Catch up on all of Karen's blogs here!

There’s a famous quote by Friedrich Nietzsche that says “That which does not kill us makes us stronger.” I have follicular lymphoma, a form of blood cancer that is considered very treatable, but chronic and incurable. I was diagnosed in July 2020 and declared to have no evidence of disease, known as remission, in December 2020.

This idea comes up in cancer treatment a lot, the idea that surviving cancer — and particularly, surviving cancer treatment — makes the patient a stronger person. There’s a lot of toxic positivity that can come up in conjunction with that idea, and it can be very hard to deal with. But the truth is different.

I spend time, perhaps too much time, on Facebook, in part because I was diagnosed during the COVID-19 pandemic and had to isolate even more than most people. While paging through Facebook the other day, I found the answer to that quote, that said the following:

“Trauma doesn’t make people stronger. It damages their nervous system. It hijacks their digestive tract. It keeps the person in a constant loop of hypervigilance. To tell someone they are stronger because of trauma is to deny what it has cost them to survive.”

This struck a chord with me. It resonated with me in a way that answered every person who ever told me any variation on that quote, those who told me cancer was a learning experience and those who told me that however hard treatment was, I’d come out the other side a stronger person for the experience. In large part, these are the same people who told me that they don’t understand why I didn’t just revert to the person I was before diagnosis, why I didn’t just step back into the same space I occupied before diagnosis.

I’m not the same person I was before. There are some things I can identify. For example, I’m far more concerned about the risk of communicable illnesses than I was before I was given cancer treatment that tanked my immune system. Minor symptoms of illness or age (which, at 58, are themselves becoming known with more frequency than I’d like), especially those that in any way resemble the symptoms of my cancer, leave me nervous for days until they clear up or some other obvious cause appears, such as illness.

Am I stronger than I was before? I don’t know. In some ways, maybe. I know that I can survive a cancer diagnosis and subsequent treatment. At least the treatment I was given, which was, relative to such things, pretty mild. In other ways, the trauma is very apparent, in my reaction to even minor changes in my physical condition and in my stress level any time I get routine testing for monitoring (I’m still getting annual CT scans). Even though I have no discernable symptoms, the week between the scan and getting the results is nerve-wracking, a syndrome called scanxiety. Some of it is getting better over time and some it isn’t; knowing that the form of cancer I have is prone to relapse at random times. It is less frequent as time goes on, but still a distinct possibility, which doesn’t help with that.

But I do know that hearing that quote, or anything like it, does not come close to being beneficial.

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