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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (6)
  • Nichola75
    6 days ago

    All of that rang true with me. I think your right. I find it hard to talk about, people are worried about my response and I feel I’m burdening then and going in! But you know what, successes need to be shared as well as the tough days. Another challenge for me. Thanks for sharing x

  • MaryW
    1 week ago

    I feel like guilt is my middle name. Guilt for making my kids worry about me at all, guilt for taking time from work for all of the medical appointments, guilt for not being outwardly sick with my cancer, guilt for having a “good” cancer when so many others are not that fortunate, guilt for spending anytime worrying about myself when I have a friend in treatment for 2 stage 4 cancers…
    I was diagnosed (incidental finding) with FL in July, one week before getting on my bike for a 160 mile charity ride to raise money for cancer research – the ride definitely became more meaningful! At my appointment next week with my oncologist we will plan my Rituxan treatment that I postponed for a few months because of the arrival of my new grandson and not wanting to take anything away from my family during that time.
    Thank you for your article Bob. I just found this site this morning and am grateful for the platform. Grateful to have a place to share!

  • Courage15301
    1 week ago

    Everything you sai resonated with me. Guilt-definitely. My sister-in-law was diagnosed with leukemia a few months after I was diagnosed with follicular. I survived she did not. Why? No one understands unless you have been through it. NOONE!!!

  • Bob McEachern author
    1 week ago

    Courage15301, I’m so sorry to hear about your sister-in-law, and I understand how you feel. I’ve lost both my parents to cancer since I was diagnosed, and having been through it myself (and having survived) does add an extra layer to the whole experience. i wish I had some words of wisdom for you. The best I can do is to say that I love places online (including this one) where we can share our stories and have someone say “I know how you feel,” and you know it’s true.
    I wish you peace.
    Bob

  • Daniel Malito moderator
    1 month ago

    @bobtalisker I think all cancers come with some sort of guilt, so you’re not alone. I have ALCL, but it is being taken care of via chemo, thankfully, It doesn’t mean I don’t have guilt though. Guilt my mom has to take off work to take me to chemo, guilt my ex-wife left during it and maybe I did something wrong, guilt that I’m not doing everything I should be to further my career. It’s part and parcel of having cancer I think. Keep on keepin’ on, DPM

  • Bob McEachern author
    1 month ago

    You’re probably right, Daniel. And I’ve been dealing with FL for almost 11 years now, and I’ve learned how to handle it. (Mostly.)
    Bob

  • Poll