I spent the last few days in Chicago at a conference for online health advocates called HealtheVoices. (English speakers, did you catch that? Health e-voices, because we are online advocates, but also healthy voices, because we try to be voices that give good advice?)
I was invited to participate by the main sponsor of the conference, Janssen Global Services, a pharmaceutical company, who paid for me to get to and stay in Chicago for the weekend. I'll be honest, my first reaction was to wonder what they wanted from me in exchange for this, but they didn't want anything. In fact, they asked me to be sure to make this clear: Janssen Global Services paid for my travel expenses for the conference. All thoughts and opinions expressed here are my own.
So, first off, I have to thank them and say that the Janssen people I spoke with were all great, and I get the sense that they are truly interested in hearing from patients and using patient experiences and desires to help shape the products they offer, the way they conduct research, the way they design clinical trials, and the way patients are treated. I don't have any doubt that Janssen wants to make a profit, but the individuals who work for them, who I spoke to, have a truly personal investment in the conditions they focus on. It's easy to forget that, and it was really nice to see.
So what is HealtheVoices?
It's an annual conference where online health advocates can get together to share ideas, learn from experts, and get refreshed and inspired. There were about 70 of us, I think -- a few cancer advocates, including a few lymphoma advocates, but also people who work online to support patients with diabetes, Inflammatory Bowel Disorder, HIV, mental health issues, and other chronic conditions. As most of you know, when someone receives a diagnosis, often the first place they turn is the internet, hoping to find information and support. These are the people who provide it.
And they really are great people, as passionate and compassionate as you would expect from health advocates. We all had different health issues that we advocated for, but we shared some real similarities, as well. (You don't have to talk too long before you find ways to connect with one another.) Some of the great folks I met:
- A young man who created a YouTube channel called Check 15, that asks you to do a cancer check on the 15th of every month. His videos are very funny, and are meant to remind you to get to know your body well enough to notice any changes. Regular monthly self-checks and screenings are ways to catch some cancers early on. (I especially enjoyed the Star Wars parody, but you all know what a big nerd I am.)
- A delightful woman from Lymphoma Canada who shares many of my goals -- providing knowledge and support for patients as they live with Lymphoma. The Lymphoma Canada web site is in English and French, so those of you in France, Belgium, and other French-speaking countries should especially take a look if you're having trouble finding good information.
- A man who used his own experience to begin blogging about depression, and advocating for mental health awareness, especially for men. I've said it a bunch of times -- Follicular Lymphoma is an emotional disease as much as a physical one. Being aware of, and taking care of, our own mental health, especially when we are first diagnosed, is incredibly important.
- A woman who has survived breast cancer and uses her photography skills to inspire and support others. She has helped a loved one who is a Follicular Lymphoma patient (always fun to trade stories about bone marrow biopsies!) with genuine compassion.
So what did I get out of this weekend?
Well, for one thing, it energized me. I'll be honest -- sometimes it's a struggle to write about cancer 2 or 3 times a week, especially when there are lots of other things going on with work and family and just life in general. I was definitely at a point where I needed some perspective and inspiration. I got it this weekend.
I learned a lot about different ways to be an advocate, both online and offline. And, again, I'll be honest, until I was invited to Healthevoices, I never really thought of myself as a "health advocate." I got into this by accident. But I'm embracing it now. I'm at a point in my life where I am willing and able to do more.
You probably won't notice any major changes to the Lympho Bob blog. I like it what I do with it, and I like being able to have the space to write about issues that need lots of space to explain them. I won't ever let anything else I do get in the way of the blog. It will always be my first priority.
But I am going to try some new things, too. I have had a Twitter account since 2009, but I have never used it. I am going to start to use it. I'm still thinking about how I'll use it, but if you are on Twitter, feel free to follow me at @Lymphomaniac. I'll start posting content there soon.
I am also intrigued by the idea of making videos. Still thinking through that one, too. I'm open to suggestions (assuming you really want to see my face and hear my voice).
And I learned about lots of ways that I can be an advocate offline, too -- ways that you would never notice, but that might allow me to represent Follicular Lymphoma patients' voices in important ways. I'll let you know about them at some point, too. I'll need to hear from FL patients to know what they want and need (and not just what I want and need).
Thank you all again for your support. If you have any suggestions at all for ways that I can help you, let me know. I always enjoy reading your comments and emails, which do help shape the blog. I'd love to know what else I can do to be an advocate on your behalf.