Your Story is Yours Alone.
There’s no handbook for being diagnosed with a major illness. Believe me, I’ve looked.
So when my Crohn’s symptoms started to, one-by-one, take over my life, I wasn’t sure where to look for support. Obviously I saw my GI team, but beyond the MD sphere, I had no further guidance. So being a millennial who came of age in the time of MySpace, I turned to the only other resource I had –– the internet.
And while I don’t recommend spending too much time on WebMD (the answer is always going to be cancer, trust me), I did find, through the internet, a wonderful community of fellow sick folks who were also feeling their way through a diagnosis that they maybe didn’t fully understand. Whether it was Lupus, or endometriosis, or Ehlers Danlos, I found social media to be a veritable treasure trove of self-styled “spoonies” eager to share their experiences, and to gain from the experiences of others.
For my first year or so in the chronic illness online community, I jumped at any chance to tell my story, regardless of which outlet or organization was asking. I had a lot to say and I was, naively, under the impression that anyone who said they wanted to help patients actually did want to help patients –– with no ulterior motives. And while that’s the world I’d like to live in, sadly I’ve come to discover over the years that it just isn’t real life.
It’s my own naivete that drives me to be so protective of this community. Working professionally in advocacy, I see “organizations” crop up all the time that claim to want nothing else but to help patients. In reality, as is the case with any community, there are people who want to monetize it, or use it to push their own agendas. Sadly, the chronic illness community hasn’t been immune to this push.
I’m not talking about individual people who want to sell you cures (although those people are very annoying). I’m talking about groups that advertise themselves as advocacy organizations when in fact, they have ulterior motives. Whether the motive is to get you to promote their drug or medical device, or just to get you not to ask too many questions about why the medical system operates the way it does, I encourage any patient approach these organizations with a healthy dose of skepticism. Check into their funding. Google them to make sure they aren’t a scam. Ask around to fellow patients and see if the organization is vouched for and you can stand behind their values.
While many mean well and truly do exist to help, The Washington Post recently published an article on the other side of that coin –– groups who exploit patients for their own needs. Some are pushing policies that benefit wealthy pharmaceutical companies, or insurers, or any number of people who aren’t patients. Be aware when you sign on for advocacy stints. It’s okay to push back and ask questions.
At the end of the day, your story is yours alone. You are the one who have shuffled between appointments, been poked and prodded, and struggled for a diagnosis. While utilizing larger platforms to tell that story is a great way to spread awareness and reduce stigma, you get to decide who gets to tell your story, and how they tell it. It’s important that we as patients understand what we stand for, what change we want to advocate for, and how to best do that while maintaining ownership over our own narratives. Because we’re a powerful force, and it’s time the major players out there knew that.