Thursday, May 10, 2018

Reflecting on HealtheVoices18

A couple of weekends ago, I went to Chicago to get some sleep in a hotel without middle-of-the-night baby feedings attend a conference supporting online health advocates. HealtheVoices is in its fourth year, and this was my third time attending. I skipped last year because Chris had a conference at the same time and I was newly pregnant and freaking out about that.

It's a conference that brings together advocates across several health conditions. More than forty different illnesses were represented this year. What that does is allow us all to find common ground, to share and learn from one another, and even drum up ways to collaborate. By gathering together, we realize that many of our symptoms, fears, and struggles are the same, whether we are cancer survivors or living with chronic pain or coping with an autoimmune disease (or several). It also reminds us to be kind, because you never know what another person has been through.

As I always said when I thought I had metastatic breast cancer (MBC), I didn't always look sick.

This is like a game of Where's Waldo?
This year's conference opened with breakout sessions for a few advocate groups. In our relatively small group of cancer survivors, I was especially floored by how many of us were diagnosed as young(ish) adults, whether with breast cancer, testicular cancer, or lymphoma. And this session -- where I met Ben and Justin and Racheli and Kathy -- kicked off a weekend where I was continually inspired, and if I'm being honest, a bit challenged to find my own road post-cancer.

Some of these people are doing wildly amazing things to support new patients and bring awareness to their communities, so there were a number of times when I wondered if I'm doing enough, and what my purpose even is in a post-MBC world (more on this later). But as speaker after speaker reminded us, if we are reaching just one person, we are making a difference. Related: it's not about likes or retweets (even if those do make us feel more useful).

We have affectionately captioned this one: two balls, no boobs...
The organizers asked me to sit on a panel about resilience and tell my story about coping with major stressors in my life. What? There've been one or two. I said yes, even if I'm not feeling my most resilient lately. A teething baby and looming CT scans and possible PTSD will do that to a person.

On Friday, I sat on the stage with another young(er) woman from Phoenix, Kate, who lives with epilepsy; John-Manuel, who is an author and journalist living with HIV; Kenzie, who made it so there wasn't a dry eye in the room as she spoke about choosing to stay in this world, even as a young twenty-something living with rheumatoid arthritis, Crohn's disease, and Addison's disease (when your adrenal glands aren't producing enough of certain hormones); and the refreshingly positive Hetlena, whose simple advice to "be mad for five minutes, then be done with it" stuck with me, even if I don't always follow that wisdom.

Apparently I chew my nails when I'm nervous...
Certain themes arose again and again. We are resilient because we are grateful for what we have, rather than dwelling on what we've lost. We all talked about finding purpose -- not that any of our illnesses are gifts, but choosing how we've responded to our diagnoses can give them meaning. And one after another, we talked about how the stories we tell ourselves -- and the world -- about our illnesses can shape our realities. My friend Sandi wrote an entire book about this theme. (You should read it.)

I participated in another break-out session on parenting through a chronic illness. We touched on feeling guilty for the days when we couldn't get off the couch (though my friend Brooke had a good point: she said she doesn't feel guilty for those crushing exhausted days, but rather the days when she actually felt well and still wasn't completely present for her son). We talked about how (and how much) to share with kids about our illnesses. We all cried. I'm not gonna lie, I could use this sort of group therapy on a weekly basis.

On the last day, I shared a bus ride to O'Hare with the keynote speaker (and fellow sarcoidosis-sufferer, though she has it much worse than I do), Karen Duffy. Yes, the former MTV VJ and bestselling author. We mostly talked about our sons and just a little about our experiences with sarcoidosis. We didn't talk about "Dumb and Dumber" at all.

I missed my kids a lot. Whenever I'm away, Quinn's voice on FaceTime seems so much smaller and younger to me (perhaps because I've only talked to adults for a few days?) and it reminds me to slow down and pay close attention to him when I'm home. This was my first time away from Noelle, and I was mostly fine until I held my friend Mariah's daughter.

Coming home from HealtheVoices was bittersweet. It is a marathon few days of networking and emoting and baring our souls. I caught up with old friends from previous years, and felt instant connections with new ones. I hope I'm lucky enough to get to participate again and again.

With the extraordinary Chrisa of The Mindstorm
Disclaimer: Janssen covered my travel expenses to attend #HealtheVoices18. All thoughts and opinions expressed here are my own.ssen covered my travel expenses
to attend #HealtheVoices18. All thoughts and opinions expressed here are my own.

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