In the last few years, I have met some amazing, dedicated people who work hard to make patients’ lives easier. Many of them came to their callings through terrible circumstances, either health issues that struck them personally or even more often, harrowing health issues that happened to a loved one – a parent, a child, a friend, and sometimes a combination of self and loved one(s). They talk and write and demonstrate, hoping to strike a chord with decision-makers and bring a change to an industry that makes more lives harder than it makes easier. (Survival does not count as “easier”.)
I wasn’t one of those people. Until I was.
Make it stand out
Whatever it is, the way you tell your story online can make all the difference.
I never wanted to talk about it, any of it. Any aspect of it. I thought that if I stuck to a healthy regimen, I could relegate my conditions to a little, tiny corner of my life. It would be like brushing my teeth – important but automatic, not something I thought about much. If someone knew about my issues and had questions, I didn’t mind answering them, but I never offered anything.
I didn’t count on the continued difficulty of either sticking to a healthy regimen or that the conditions would keep piling up. Between meds, exercise, and nutrition -- even the bare minimum of each -- my healthy regimen is a huge time suck. Add to that the adjustments I have to make with every new condition, there is just no way any of it is going to be confined to a commitment as small as brushing my teeth.
As time went by, my experience grew. I still didn’t want to talk about it. I just wanted to live as normal a life as possible. Occasionally, I would jump in and participate in things when my doctor asked. There was the new glucose meter tech that needed to be tested. And that nutrition management plan they were about to launch but hadn’t tested yet – I was a last-minute system check on that one. Then there was the invitation to be a patient interview in which I would allow myself to be interviewed by Georgetown Medical School students as their first exposure to a patient. I didn’t think any more about that invitation to participate any more than I did the others. Maybe even less. The time commitment was smaller.
Turned out it was important, really important. It changed my life. It was the first time I realized that all this experience I never wanted could be used to help people. Not just medical students, but maybe people like me, too. Because of that interview, I am blogging and advocating and advising and trying to find a way to make healthcare reform into my day job.
I recently sat on a panel about becoming an influencer. The host and my fellow panelist came from very different spaces than I, but we all had a common cause. We want to make chronic lives easier.
Everyone comes to this space in their own way – at different times and for different reasons that somehow turn out to be remarkably similar. As more and more people begin to think about how they want to be involved, there is a lot of talk about “finding your voice”. But I’m me. I always had a voice, and was never afraid to use it. I just didn’t know I wanted to use it like this. For me it was more about finding a reason, and that took more of an awakening, an inflection point.