How we see the world shapes who we choose to be — and sharing compelling experiences can frame the way we treat each other, for the better. This is a powerful perspective.
Q: Ever since my diagnosis of breast cancer, I’ve been posting pretty openly on Facebook about my experience. There’s really not a lot that I don’t feel comfortable sharing, but I do use content warnings if there’s graphic medical details, TMI stuff, or anything else that might make people feel uncomfortable or trigger them. Using social media in this way helps me feel less alone during my treatment and allows me to avoid having to reach out to people one-by-one if I need or want them to know certain things.
Recently, though, some of my family members and close friends have been gently questioning me about this and saying things like, “Are you sure you really want all of that out there?” I’m not sure what they mean by “out there” since my Facebook is friends-only. I get that you’re never guaranteed privacy on the internet, but it’s not like I’m blasting it out to 500,000 random Twitter followers. Are they right? Should I be more private about my treatment?
A: Good for you for doing what helps you cope with your treatment and access your support system. Many people find it really helpful to be open on social media during cancer treatment and even after remission, for the reasons you mentioned and many more. Others prefer to keep things offline as much as possible, which is also a valid choice.
While people may be right that there could be some negative consequences to your decision as well — more on that in a bit — it’s a bit unfair of them to assume that you haven’t already thought about that.
I was super open on Facebook and on my blog during my treatment. It helped a lot. It allowed me to get even more support, both emotional and practical, than I would’ve otherwise. Like you, I was able to say things once and then refer people to the relevant posts rather than repeating stuff that would’ve been exhausting or even painful to repeat.
And because I put all my cancer-related posts in a special Facebook album titled “Fuck Donald” (“Donald” being the name I gave my cancerous boob), I was able to have a written record of that year of my life that I know will be extremely valuable later. (For all that everyone told me to keep a journal, who the hell has time for that in between all those appointments, the exhaustion, and keeping up with as much of your regular life as you can?)
My friends often told me they benefited from my openness, too. Many said they learned much more about breast cancer than they ever thought they’d need or want to know — knowledge that many of them felt would probably come in handy later. Some mentioned that my posts helped them empathize better not just with me, but with everyone they knew who had a chronic or serious illness.
They also noted that knowing what was going on with me and how they could support me was a relief, not a burden
That said, some people choose to keep quiet or even silent about their cancer treatment online. And that’s their prerogative! What’s right for one person isn’t necessarily right for another.
I certainly experienced some drawbacks to sharing a lot: condescending or harmful comments (my favorite phrase for a while was “I’m not asking for advice, I have complete trust in my medical team”), people presuming to know and understand things they couldn’t possibly know or understand, anxiety on my part that I was alienating or overwhelming people especially new contacts, and, of course, the vague-but-as-yet-unrealized possibility that this will come back to bite me later.
Some people prefer not to have to deal with people worrying about them, making those unhelpful comments, or bombarding them with messages. They might work in fields where their job prospects might suffer if they reveal personal medical information online. (If you refuse to hire someone because they had cancer, you are making a mistake, my friend, because we are fierce.)
They might also just work differently from you and me, and prefer to find their support elsewhere.
There can be a downside to that, too, of course. Having to maintain the image of You Without Cancer to most of the people you interact with over the course of the months or years you’re going through treatment can take its toll.
People might also find out through others, and you then have to deal with the ensuing awkwardness. It can also be isolating and depressing to log on and see your profile picture — former hair and all — and to know that what most people are seeing isn’t what’s going on, at all.
But this is key: It’s your choice.
If you’ve thought through the pros and cons and you’re doing what feels right to you, that’s the best you can do — it’s the best any of us can do
Maybe your concerned friends and family think they’d choose differently if they were in your shoes — not that they have any way of knowing. Or maybe they’re not that worried about you having your experience “out there” at all, and they’re just trying to find a socially appropriate way to tell you that your sharing is too much for them.
But taking care of their feelings isn’t your responsibility right now. Your responsibility is to take the best care you can of you.
Sure, maybe your posts will cause an ignorant person to judge you, stop being your friend, or deny you a job. These are valid concerns, and you get to decide how to navigate them.
But maybe they’ll bring you more love and support you could ever imagine, save the life of someone who decides to finally do a breast self-exam, and even get you an opportunity to publish your own advice column when this is all over. (Hey, it happened to at least one person I’m aware of…)
You never know.
Yours in tenacity,
Miri Mogilevsky is a writer, teacher, and practicing therapist in Columbus, Ohio. They hold a BA in psychology from Northwestern University and a Masters in Social Work from Columbia University. They were diagnosed with stage 2a breast cancer in October 2017 and completed treatment in spring 2018. Miri owns about 25 different wigs from their chemo days and enjoys deploying them strategically. Besides cancer, they also write about mental health, queer identity, safer sex & consent, and gardening.