Cancer, Shame, and Thriver's Guilt
Last updated: June 2023
“You don’t look like you have cancer.” Boy, if I could tell you how many times I heard that when I was going through it.
A Different kind of cancer
For those of us who suffer with blood cancer, which is many times a chronic condition, many of us don’t present in a stereotypical way, and that ends up in a plethora of emotions, and one of those is shame, feeling ashamed. (Ohh, plethora – SAT word used, check!)
Whether you live with CLL, or AML, or lymphoma, or any other type of blood cancer, chances are even if you are in remission they will never really use the “c” word. You know the one I mean – no, not cancer, but “cured.”
Blood cancer is a lifeling partner
That’s because almost all blood cancers are a lifelong partner. Not the kind of partner that buys you flowers for no reason or brings home your favorite sub sandwich for dinner, with extra sauce. No.
Blood cancer is more like the partner that co-owns your business and spends the petty cash on strippers and pixy sticks. The kind of partner who lives with you but refuses to flush after using the bathroom. The kind of partner that… well, you get the idea.
It’s not the type of lifelong partnership you’d wish on your worst enemy. The ironic part is, though, while we have bad days where we look exactly as bad as people think we should, some days we don’t and those are the days when the shame and guilt usually hit.
Why? Well, because it’s when you are feeling your best that you realize how bad it is for others.
My cancer isn't visible
The reason I bring it up this week is because we went to a holiday concert this week and it reminded me of an incident when I was in the throes of my chemo. It was about two weeks after my third chemo cycle and on that day, I was feeling pretty good. I remember it because it was one of the first times that the side effects of chemo, the symptoms of my RA, and the pain of the tumor didn’t conspire to make my day a flaming pile of dog poo.
So, I decided to go to the store for the first time in a while. I pulled into the parking lot and parked in the handicapped spot (I had a placard already due to my RA, but I would have gotten a temp one even if I hadn’t.)
Handicapped spot shaming
I got out of my car, which I had just taken to the car wash because, well, look good, feel good, right? I was all smiles and everything was going great – until. Until the person next to me in the parking lot decided to take it upon themselves to comment on my use of the disabled spot and said I, “should save the spots for someone who really needs it,” and shame on me, etcetera.
For a few seconds, I believed her and felt ashamed. Maybe I should have used a regular spot since I was having a good day, was I being a greedy cancer patient? Well, the answer to that is a resounding, “no,” and fortunately, I remembered it quick enough to be able to tell the woman where to put her stick shift. (I.E. I just smiled, said, “have a nice day,” and went into the grocery store.)
Am I entitled?
The thing is, I couldn’t stop thinking about it. Even though I knew I was perfectly entitled to use the spot I still felt a tiny bit of shame for doing so.
Why? Well, because I didn’t conform to the world’s stereotype of someone with cancer. I didn’t lose all my hair. I wasn’t vomiting left and right. I wasn’t as white as ghost and as skinny as a prisoner of war – you know, all the things that movies and shows have been using to depict cancer patients for years.
Yes, even though I knew it was just frivolous talk, I still couldn’t shake the question from my mind – should I be ashamed of my cancer because it wasn’t as bad as it could be?
I think many of us go through this and it’s a cousin of survivor’s guilt. Let’s call it "thriver’s guilt."
Maybe we feel a bit guilty?
Because some of our cancers are not as bad as others, we feel ashamed and think that maybe we shouldn’t use the same services as those who have it worse. Maybe we shouldn’t flaunt how well we are doing for fear of making others who have it worse feel bad. Maybe we should just keep to ourselves, lay low, and quietly rejoin society once we are done with chemo.
We’ve all had pangs of emotions like this, and the truth of the matter is that there is no reason to be ashamed – everyone’s battle is the most important thing in the world to them and no one can tell you that your fight isn’t tough enough or isn’t dire enough.
Blood cancer is still cancer
Blood cancer is still, *checks notes* CANCER, and that’s a major event and nothing to be ashamed of even if some others have it worse. It’s perfectly fine to feel for cancer patients who are suffering more than you, but your pain has value also. Shame has no place when it comes to surviving blood cancer.
Shame, thriver’s guilt – these are real things. We feel them whether we want to or not, but just remember – simply because someone’s else road has more bumps doesn’t make your own journey any less lengthy. It just makes it different, and that’s nothing to be ashamed of especially since we’re all going to the same destination – cancer.
How do you feel about your support system?