Looking good is not always feeling good (especially in cancer).
“Whoever said that when you look good, you feel good, does not know chemo.”
— Anonymous
There is a perception of what a cancer patient “looks like” that has become all too ubiquitous. I can tell you from deeply personal experience, that looks greatly vary and we all need to reframe “the image” we may have, because each cancer patient is an individual. Some patients lose their hair, some don’t. For some, their hair grows back, for others it doesn’t. Some lose weight, some gain weight. Some look fatigued all the time, some don’t. There is no “one image” for all.
I have met many good-looking cancer patients in my lifetime, and especially in the last four+ years of my journey. In fact, if you too met many of these good-looking people, you would probably never think they were going through cancer treatment. And while it may seem like a compliment, for many of these good-looking cancer patients, it is a double-edged sword. Allow me to explain.
One of the comments I quite often hear from fellow cancer patients, is how to the outside world, they “seem to be doing great” because they “look great”. Some people will even say to them “you must be on light-chemo or no chemo”. First of all, there is no such thing as “light chemo”. Chemo is like a bad smell, no matter the strength, it still stinks.
While many cancer patients look good on the outside, they are often deeply struggling with fatigue, medication side-effects, depression, anxiety, loneliness, loss, fear, and many other hidden feelings. And it is not just cancer patients, I know that there are people with other illnesses, who may also be struggling and yet “look great” on the outside. And even though our topic transcends beyond the cancer realm, for purposes of this article, I will look through the lens of those closest to my own journey – metastatic breast cancer patients.
Towards the end of 2020, as the world was in a time of confronting a seemingly insurmountable pandemic, I too was going through my own seemingly insurmountable time (eighteen consecutive previous months of cancer treatment failures, and a raging cancer that, at the time, had pierced through my skin like a flesh-eating bacteria and ruptured my chest). It was bad.
And yet, you would never know it from the smile in this photo, would you? I say this humbly, but most folks just told me that “I looked great”. And that was lovely...but....
As always, we share a bit of perspective, with the intention that it will serve as helpful to you or someone you love. If it is helpful, please share it.
So here are my top three things I wish more people had said to me:
1 | “It’s wonderful that you look great, but what you are doing is tough stuff. How are you feeling day-to-day? What is it truly like?”
In my entire journey, there has only been one person who has asked me the “how are you feeling day-to-day” question. One. Most people either assume I must be ok because I “look ok” or they ask only about how I am feeling “the week of treatment”. The thing about this thing called cancer, is that managing it, is like trying to manage your thoughts. Think about that....your thoughts are running all the time. So is this “thing”.
The Aha! If you are the person ‘in the journey’, I encourage you to tell people about your day-to-day. It will be quite freeing for you. It’s about being real. If you’re not the one in the journey but you know someone who is, I encourage you to ask about the “day-to-day”. And just listen and be present for the person to let it out. It is the genuineness of truly trying to understand and see the individual that matters most.
2 | “It’s wonderful that you look great, but what you are doing is tough stuff. How are you juggling all that you are doing?”
In 2019, during the first eighteen months of my treatment, I was still working full time and (like many people), it was a job that required a lot from me. Towards the end of 2020, when the treatment option were running out, I could no longer do what I had been doing. I could not juggle it all. I had to walk away. It was a very difficult time.
The Aha! So if you are the person ‘in the journey’ I encourage you to let some balls drop – you cannot juggle it all, all the time. If you are willing to be vulnerable, the people who truly love you will understand and show up for you. If you’re not the one in the journey but you know someone who is, I encourage you to ask about the “juggling”, sometimes the first step in being vulnerable comes from someone seeing our unreleased vulnerability.
3 | “It’s wonderful that you look great, but what you are doing is tough stuff. If you could delegate one thing off your plate or to-do/to-worry list, what would it be?”
For many people, delegating is one of the hardest skills to learn and to do. I think the hardest part is finding the “just one thing” because most of us look at our to-do lists as one contiguous item, versus breaking it down into bites.
The Aha! If you are the person ‘in the journey’, I encourage you to split out that to-do list and start assigning other “to-doers”. Even if you can get it all done, you don’t have to – it’s ok to nap, take a break, cry, sit and stare, etc. If you’re not the one in the journey but you know someone who is, I encourage you take something off their to-do/to-worry list and just do it. Don’t ask for their permission, just do it. A seemingly random act of kindness can make all the difference in their day, week, year and beyond. Trust me.
With love,
Amelia O.