A topic that comes up fairly often in emails I receive from you, my dear readers, and in the Facebook groups I’m in is this one – feeling marginalized, regarding your cancer experience. This can happen regardless of your stage, btw. Has this ever happened to you? Have you ever felt your experience is being marginalized?
What do I mean by this?
For example, you didn’t have chemo, so you’ve been told things like, well, you got off easy then or, I hear radiation is a breeze. Perhaps you’ve heard things like, you only had to have a lumpectomy. Or at least you still have one breast left. Or you’re only stage 0 (or 1 or 2). Or whatever the case might be.
And of course, many of us have heard, at least you got the good cancer.
There is no good cancer!
Basically, saying something that makes someone else feel marginalized implies, just suck it up; you don’t have it so bad.
Talk about no validation.
Of course, we all fully realize there will always be some who have it far worse than we do, as well as some who have it far better. Such is the case with life in general, right?
Again, do you ever feel as if your cancer experience is being marginalized?
I posed this question on Facebook and sifted through some emails and decided to share some of the comments with you, my dear readers. Perhaps a surprising thing (or perhaps not) are ones from metsters. We’ll get to those. But first, here’s what Donna had to say:
Even in the BC community, I feel as though I’m not enough of a “sister” because I didn’t have burned skin, chemo brain or lose my hair. But I did have cancer, I did have a mastectomy, I am on hormone therapy that interferes with my quality of life, I did have additional surgeries all related to BC and I live every day with the same fear of recurrence.
It’s sad that even within the breast cancer community some of us, unintentionally or not, marginalize experiences of others. Come on people, let’s try harder not to do that. And yes, I’m guilty of doing it too.
My nurse said, it’s good news… it’s not stage 3!! I was gob smacked… Nothing about diagnosing cancer at any stage is good or lucky!
Taking this even further, I had a doctor suggest that perhaps I should be more grateful. I am paraphrasing, but his words were along the lines of, you’re alive, aren’t you?
Kerri had said this to say about the “good” cancer:
I’ve been told many times that I have a “good” cancer. At first, it felt so minimizing, but five years on, I understand that these folks were trying to encourage me. Still, ranking our diseases is a hurtful thing to do.
Hurtful, no kidding. Again, there is no good cancer! And guilt, including survivor’s guilt, rears it head pretty frequently.
Nancy had this to say about guilt:
I know so many who have had more extensive surgeries, more intense therapies, and who have died from breast cancer. I sometimes feel guilty that I didn’t have disfiguring surgery, that I didn’t have to go through chemo. So it works both ways. People think I “got off easy,” and I don’t argue the point, even though deep down, I know I will always live with the fear of a recurrence.
Elaine expressed similar feelings of guilt:
I had a lumpectomy, no need for recon or prosthetics, sentinel node clear, no lymphedema, made it through chemo and rads, and really have minimal side effects from arimidex. I don‘t know who thinks it was easier sometimes…them or me. And I do feel some guilt on occasion. All through treatment, the deterioration of my knee was a bigger bother. Of course, I constantly compare my experience to my mom who died of mbc. But it is a weird thing.
Julia had this to say about “BRCA world,” and it’s important (and troubling) because if she feels this way, others do too. This topic is worthy of a post all its own down the road. If anyone else has experienced something similar, please comment or send me an email. I want to hear from you.
I happen to have a genetic situation about which little was understood until recently, a deleterious PALB2 mutation. In function, PALB2 is in a continuum with BRCA 1/2 – some think it should be labeled BRCA3. And yet, there’s no point in attending meetings of support groups such as those organized by FORCE because they’re dominated by those who are BRCA 1/2 affected, and there’s little interest in going beyond. The general attitude seems to be that this is a special club for “BRCA Babes” and all others are interlopers.
And as I mentioned, marginalizing happens among our stage 4 friends too.
Gail had this to say:
I was told that at least I had 3 years before it metastasized. I also feel guilty that I’m still here almost 8 years later and many with MBC don’t survive this long, so in that sense, I’m very fortunate.
Kelly, also stage 4, shared this:
Some people think those of us with “only” bone mets have it (relatively) easy.
So that’s a sampling of comments. And let’s not forget how those with metastatic disease feel marginalized during October and the rest of the year, too, because of the lack of attention and research dollars that stage 4 has historically received in awareness campaigns and such. For far too long, metastatic breast cancer were unspoken words. Literally. Unspoken.
As a reader with metastatic disease once said in an email:
The early stagers have significant and long-lasting collateral damage, too, along with ongoing risk of recurrence, but dying trumps (sorry, I hate to use that word) everything.
No one can argue with that. Still, walls, hierarchies of pain and suffering quotas remain unhelpful, do they not?
I’ve written about the walls in Cancer Land before and the hierarchies too. Perhaps I was too subtle! Some of that stuff cannot be avoided, I suppose. There is comfort in surrounding ourselves with those who truly get us. But this isn’t really about walls and hierarchies.
It’s more about respect and remembering every person’s experience is unique.
It’s also worth noting, as Sue, Elaine and Gail pointed out, sometimes we do the marginalizing to ourselves. Often we are hardest on ourselves. And not just regarding cancer, am I right?
Bottom line, no one’s cancer experience should ever be marginalized, including yours.
NOTE: So what should do you do when someone makes you feel marginalized? That’ll be a post for another day.
Have you ever felt marginalized regarding your cancer, or something else?
Why do you think this happens, even within the breast cancer community itself?
What do you do when someone makes you feel this way?
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