As you may know if you have read my other blogs or follow me on twitter (@SeriouslyCancer), you know that I have a cancer called Synovial Sarcoma. I always have to start my diagnosis with “a cancer called” cause if I just told someone that I have Synovial Sarcoma that might think I have a weird STD or something. Nobody knows what a sarcoma is besides the 12,000 of us diagnosed with it. But that only accounts for 1% of all cancer diagnoses so it shouldn’t come as a surprise that no one has heard of it. I guess I could just say I have soft tissue cancer, but people still won’t know what that means. Soft tissue cancer sounds like I’m saying my Kleenex has lumps.
Besides the difficulty in nomenclature, there are issues with finding support. I mean, you type “breast cancer” into twitter or instagram or where have you and you get met with a flood of different bloggers telling their stories and foundations talking about their recent events and all sorts of pink ribbon images. The NFL even has an entire campaign dedicated to it. You do the same with “sarcoma” and you find yourself reading posts from 2012 without even having to scroll down. The place is an absolute ghost town. I honestly don’t even know what color the ribbon for sarcoma is or if we even have one. Not that I’m a big ribbon guy, but it would be nice to at least feel acknowledged.
The point of all of this is that it can be lonely when you have an unusual cancer diagnosis. Not just sarcoma, but all the rare cancers out there. Feels like you have no community besides just the general cancer community. When you don’t see many foundations with your cancer’s name on it, it can make you think that nobody is even looking for a cure. It sucks and is very lonely.
If you’re ever feeling like I did, like you’re all alone with no one like you to talk to or relate with, talk to your oncologist. See if they can connect you with someone with a similar diagnosis to yours. Maybe there’s a mentoring program at your hospital. After all, your oncologist is probably aware of everyone in your area with your rare disease since there probably aren’t many of you. If you can’t find a helping hand that way, hit the interwebs. I’m just one in a sea of bloggers thinking my story is worth sharing, I’ll bet if you look hard enough you can find someone who has been through what you are going through and took the time to write about it (or at least is open to talking to you). If that doesn’t work out, then stop looking and let them find you: start a blog or start being open about your condition on social media. If everyone is looking and no one is producing content, then no wonder you can’t find each other. If you really don’t know where to start, start here.