Going beyond ‘You look great’ for Blood Cancer Awareness Month
A simple statement brings mixed emotions for myeloma patients
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“But you look great!”
Have you ever heard some variation of that? I have. I confess, I’ve even said it. I think it’s a natural reaction. We’re conditioned to believe cancer — or any serious illness — will devastate us on the outside as much as on the inside, and we are surprised when the outward appearance doesn’t match the interior. I prefer to hear things as having positive intent most of the time.
But it offends patients, and that occurred to me the last time I said it. So after a moment, I continued, “But I know looks can be deceiving. How do you feel?”
Because that’s what really matters.
Sometimes friends and family don’t understand
Recently, I came across a social media post from a myeloma patient whose friends and family didn’t understand the impacts of the disease. In this case, “But you look great!” can be code for “So why can’t you go to work/clean the house/(insert task or obligation here)?”
Negative intent, rather than positive.
And it’s hard to answer, since myeloma affects each of us differently. Some of us can go back to work pretty quickly. I went back just a few months after my stem cell transplant in 2019. Some take on incredible physical challenges, like the Iceland Cycling Expedition put on every year by the International Myeloma Foundation (IMF). And some face enough of a challenge getting out of bed every day. I wouldn’t be surprised to find that some people rotate between all of those things from time to time.
Sometimes our friends and family see those positive stories, or hear the word “remission,” and cannot understand why we’re not at 100%.
Small steps toward awareness
So how do we answer that not-so-well-meaning question without causing a quarrel? The IMF has some tools to start the conversation, as part of Blood Cancer Awareness Month. Their #KnowMyeloma campaign includes social media graphics and downloadable fact sheets about the disease. On Sept. 24, they’re asking patients, caregivers, and just about everyone connected with myeloma in some way “to share one fact, one story, one resource, or one hidden reality of life with myeloma,” particularly on social media. The event is called KnowMyeloma Day.
The sharing may not resolve all the tensions around unmet expectations, but it is one small step toward the understanding we’re all looking for.
Note: Rare Cancer News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rare Cancer News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to rare cancer.
Crystal Henderson
I was in horrible shape after my stem cell transplant because I had a lot of complications. My blood pressure spiked several times (as my kidneys were the primary victim of MM) causing a brain bleed as well as the blood vessels in my eyes to burst. I developed pneumonia and breathing was a huge challenge. I lost so much muscle mass while in the hospital for over a month that I could barely walk. It took me a year to really recover from that (and then we tried doing a low dose of Revlimid for maintenance and it sent me back into neutropenia and I ended up in the ICU for 5 days). I'm still in deep remission almost 4 years after my stem cell transplant so I'm incredibly grateful, but you're right about how recovery looks very different for each myeloma patient!
Katherine Greco
Love the question and love the answer more! A person know when they are told you look great" it is just someone being kind or to make us feel better. The comeback question is brilliant!
Katherine Greco
Love the question and love the answer more! A person knows when they are told "you look great" it is just someone being kind or to make us feel better. The comeback question is brilliant!