The stigma of suffering alone

Many, many people have sent me notes and messages thanking me for being so open about my journey through cancer. To be honest, my first thought has always been – well did you expect any otherwise from me? I’ve always been a pretty open book, and I’ve rarely been one to keep my mouth shut on anything (although to be fair, I’m getting much much better at that as I grow older and wiser. Or maybe it’s just learning from my mistakes…. either way…..). But as I think further about it, I realize that the majority of people are not the same as me. Many people go through this alone, or silently, for a million justifiable reasons. Just as everyone is different, everyone will approach their cancer diagnosis differently.

My route, however, is one where I think it’s important to be open about it. I feel like it’s kind of like depression in a way – we need to talk about it. I think I’d burst if I didn’t. My experience thus far has been that even if you are the most social, popular, out there person, cancer can be a very, very lonely ride. It’s so deeply personal – medically, spiritually, emotionally, physically – that nobody will ever have the same experience. Unless your friends and family have been through it (and often even if they have), they never really get it, which can make things way harder than it needs to be. It’s shocking how ill-equipped the majority of people are in dealing with something of this magnitude. It’s not just the cancer. It’s loss of identity, loss of self. It’s fear, anxiety, depression. It’s faith or lack thereof. And hope or lack thereof.

To be honest, HOPE is the one thing everyone is really good at faking when they know not what to say or do.

So I have chosen to be honest through my Facebook posts and my conversations about all things in this process. Don’t get me wrong – I would never post anything during those times when I lay awake at night worrying about how we’ll make ends meet, or what would happen should my husband’s heart give out from the stress of it all, or who will take care of my kids should things go south. But I assume you all are smart enough to know that obviously there are tough times too. And I don’t want to bring anyone down. Unlike some people, I don’t view Facebook as a place to blatantly solicit pity or attention.

There’s a social stigma about cancer, just like mental illness, that every now and then will come out to bite you when you least expect it. Just when you feel like you’re finally comfortable in your baldness, someone will look at you like a leper, or ask a really, r e a l l y, REALLY stupid question. Or someone that you felt had your back will suddenly disappear, or worse, ask one of said really stupid questions that make you realize they have not been paying any attention whatsoever to you for the last three months. (Don’t get me wrong – there’s no such thing as a stupid question when it comes to something as vast as cancer, but I mean the kinds of questions that actually hurt your soul because they are so poorly thought out). So I think it’s important to talk about it. We need to be open to be able to heal. And we need to educate people so they know that when (and I do say when) they get to this place, they will know that they don’t have to sit and suffer in silence and loneliness.

So, I suppose you’re welcome. Now go get a mammogram.