Follicular Lymphoma: Strange Guilt

People who know me have heard me say this a lot: cancer is an emotional disease as much as it is a physical disease. For me, one of the emotions I feel a lot is guilt.

I was diagnosed over 10 years ago with follicular lymphoma. It’s an incurable blood cancer. But it can also be slow-growing. When I was first diagnosed, I joined an online support group for people with non-hodgkin lymphoma of all types. Some had a slow-growing type like mine. Others had a more aggressive, faster-growing type.

More than once, a discussion would start on this topic: Is it better to have an indolent, slow-growing lymphoma, or an aggressive, fast-growing one?  (I’ll call it a “discussion,” because it was mostly good-natured. But some people took it a little more seriously.)

The discussion usually went down like this:

Patient with fast-growing lymphoma: Indolent cancers are slow-growing, and you can go years without treatment. So that’s better.

Patient with slow-growing lymphoma: Yes, but slow-growing sometimes means incurable. Chemo might be bad, but you have the chance at a cure.

Fast-growing: Sure, there’s a cure, but I deal with the long-term effects of the chemo.

Slow-growing: Yes, but at least you know what you’re dealing with. I’ll have years of being unsure about when it’s coming back.

Etc., etc. It could go on like this for days.

With follicular lymphoma comes guilt

Now, I usually stayed out of these discussions. I’m one of those people who thinks there’s no such thing as a “good” cancer. And if there’s no “good” cancer, then there can’t really be a “better” cancer, right?

But I also stayed out of the discussions because they made me feel bad.

I was lucky enough to be able to do some watchful waiting for two years. My lymphoma grew slowly enough that I could hold off treatment.

And with it came a large helping of guilt.

It’s really hard to be in a discussion about cancer treatments when other people are describing all of the problems they’ve had because of treatments, and you haven’t even had your first treatment yet.

It’s a horrible combination of survivor’s guilt and imposter syndrome. Guilt because your cancer hasn’t resulted in the same problems as other patients’ has. And then feeling like you don’t even belong in the conversation. (And sometimes even having people tell you that you don’t have a “real cancer.”)

Sharing success, despite the guilt

But one day I shared a success – my five year diagnosiversary. I did it reluctantly. I didn’t want anyone to feel worse because I was doing OK.

And the response surprised me. If anyone felt bad, they didn’t say it. Instead, a lot of people said they were inspired. They saw that it was possible to have follicular lymphoma and live and thrive. It showed them that they had a future. It gave them hope.

We can never really know how other people will react to what we have to say. But we should say it anyway. There’s always someone who wants to – needs to – hear your story. It shows them that they’re not alone. And we never know what exactly will click with them.

So tell your story. Don’t let guilt or some other emotion hold you back. You never know who might be inspired by it.

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