The Positivity Trap of Follicular Lymphoma and Cancer

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!

One of the most difficult issues to deal with as a cancer survivor is the positivity trap. Four and a half years ago, I was diagnosed with follicular lymphoma, a form of blood cancer that is considered very treatable, but chronic and incurable. I’m currently NED (No Evidence of Disease, per my oncologist - remission for the rest of us) following six months of treatment that ended in December 2020.

Any illness, any injury, any slight change in physical condition that I can’t trace to an obvious cause brings the fear that my remission might have ended. Most recently, I caught a cold — just a cold, because I tested to be sure it wasn’t something potentially worse — but a bad one, which has hung on for about 10 days now. Like many colds, it came with sinus congestion, cough, and fever. It’s that last one that makes me nervous.

One of the most common symptoms of active follicular lymphoma is night sweats, a term that can be misleading because the sweats can happen at any time - mine used to happen in conjunction with sudden fatigue; I’d get really sleepy midafternoon, fall asleep on the couch (I was a teacher, and it was summer — naps were not unusual), and wake up covered in sweat. I didn’t think much about it at the time, because it was well over 90 degrees. But back to my cold — which, as I said, came with a fever. And like many fevers, it flared up at night, or at least seemed to, because a fever plus a blanket can make me feel hotter. When that happened, I would overheat, throw off my covers, and wake up sweating from the fever.

Even knowing I was sick, even knowing the cause, it freaked me out, especially in the middle of the night, not feeling well, coughing, sneezing, and not really thinking straight from exhaustion and fever. After several consecutive nights of this, it was making me very nervous, and I talked to several of my friends about it.

This is where the positivity trap comes in. One of my friends is relentlessly positive; she can see the positive side of nearly anything. Sometimes that’s a good thing, but sometimes it can make things worse. Her immediate reaction was to reassure me that it was the cold and the fever, that there was nothing wrong, that I could contact my oncologist or primary care doctor, but that they would say the same thing, but on the positive side, at least I knew that my immune system - damaged by cancer treatment — was working again, because the cold was slowly clearing up, without more than a few over the counter medications.

Here’s the thing. She’s right. Objectively, I know very well that she’s right. But subjectively, I’ve reached a point where sometimes I just want to be validated for feeling bad when I actually have a reason to feel bad. Being jollied along all the time makes me feel like a child — not a very pleasant feeling in my late 50s — one that can make me feel worse instead of better. Sometimes, you just want to wallow for a little while, and after a cancer diagnosis and treatment, people often don’t want to let you; they spent a lot of time supporting you through treatment, and even several years later, are still treating you like a patient instead of a person. I get it. I really do. But it’s another thing that will never be like it was “before”.