HealtheVoices 2018

This past weekend, I once again participated in HealtheVoices -- a summit of online patient advocates.

That's Health-E-Voices -- advocates with "healthy voices" but who also use their "health e-voices" to help support and educate others who share their health conditions.

The summit included 122 advocates for over 40 health conditions like Diabetes, Multiple Sclerosis, HIV, Mental Health, Inflammatory Bowel Disease, Psoriasis, Chronic Pain, and several types of cancer (including, of course, Follicular Lymphoma -- I think I represented us well).

(By the way, Healthevoices is sponsored by Janssen Pharmaceuticals, who paid for my travel expenses, though all thoughts and opinions about the summit are my own.)

Over the weekend, we learned a lot about social media (there were people from YouTube and Twitter and a few online health sites), the healing power of humor, valuing differences -- and about ourselves and each other.

This is the second year I have been invited to go, and I was really happy to be back. Last year was special to me. Honestly, before last year, I wouldn't have even considered myself an "advocate" -- I was just a guy with cancer and a blog.

And now, a year later, I've certainly kept up with the blog, but I've tried to find other ways to reach out to Follicular Lymphoma patients, to support them, to learn more. I'm on Twitter now (find me @lymphomaniac). I use it to share information that I find helpful and important, but I also use it to connect with very smart people and learn more about our disease, and share what I learn with you.

And I've done more writing. You can find articles that I have written on The Mighty, a site where patients of all kinds share their stories.

I made a cool video for WEGO Health that introduced a WebMD slide show. I wrote an article on the power of cancer humor for Patient Have Power magazine (sorry I can't link to that one -- it was a print magazine from Clara Health). I was the first guest blogger for the Savvy Co-op blog.

So HealtheVoices 2017 was really great for me. It made me a better advocate. In fact, it made an advocate, period.

This year, I learned even more about some of the new ways I can help other patients. We'll see what comes of it. I'll keep you updated about any new and interesting ways you can find me online.

What's more important, though, is that it gave me a boost. It's hard to think about cancer every day. Hanging out with a whole bunch of really inspiring people for a weekend gave me some energy to keep going.

(These people were amazing. They are a model for going through something very hard, and not only coming through it, but turning it into something amazing.)

One of the best things about the weekend was getting to meet some other cancer advocates. A bunch of us were asked to review some online materials and give our opinions. (I'll share more about that some other time.) It was great to hear their stories -- no matter what kind of cancer, we all have some experiences in common -- and it was great to see the way they advocated so fiercely for their communities.

Let me tell you about some of them:
There's Kyle, who runs Check 15, a monthly reminder to check yourself for possible signs of cancer. Very funny videos make it easier to deal with uncomfortable topics -- share them with family and friends.
And there's Racheli, a Hodgkin's Lymphoma survivor who writes a column for Lymphoma News Today and makes videos about her experiences (as a patient and about her life after treatment).
And Ben, who runs Cuck Fancer, which helps young cancer survivors to get their lives back.
And Jen, who helps Breast Cancer patients and moms who have cancer.
And Justin, who is trying to change the conversation about men's health and testicular cancer.
And Michele, who survived a slow-growing, indolent Leukemia to "dance through life."
And Rick, who founded the Answer Cancer Foundation to provide support to many cancer patients.

And that's just a few of the great people I met this weekend.

It wasn't just about cancer. I met so many advocates, and learned about their conditions.

I like to think of myself as a pretty empathetic person -- I can understand and care about what other people are going through. But HealtheVoices makes me even more empathetic. It makes me want to go a little deeper into learning how other people feel.

That's especially true of the mental health advocates who were there. As you know, I take special interest in the emotional lives of FL patients. Talking to mental health advocates gave me some insight into how people think, and feel, and react.

And maybe that's the biggest lesson I learned in my two years at HealtheVoices. It was something I've heard before, and was said again this weekend:

Be kind to other people. You don't know what they're going through.

Thanks, as always, for reading. I look forward to sharing more with you.