#HealtheVoices16: Making Connections that Count

HealtheVoices16 Group

I have been thinking about what to say about #HealtheVoices16 since I got back two weeks ago and the wholehearted truth is, I don’t know what to say. I have tried to write this post a handful of times – I’ve started it six different ways, changed the layout twice and deleted it each and every time. I’ve selected pictures, re-selected pictures and then changed my mind on those pictures, yet again. In addition to all of that, I’ve felt a surmounting anxiety along the lines of “Why can’t I say what I want to say?! What is wrong with me?!” It’s no secret – I get into writing slumps like any other blogger – but this time I actually have something to say, and I can’t find the words.

So, I’ll simply start at the beginning. HealtheVoices is a revolutionary conference for online patient advocates and if you’re here, I’m sure know blogs, online support groups and social media are changing the way we address, treat and live with illness and disease. HealtheVoices was created by the thought leaders at Janssen Pharmaceuticals to bring advocates from a variety of illnesses and conditions together, in one place at one time, to talk about the issues we face as advocates, supporters, doers and thinkers and to give us the tools we need to do our job better – our job being to support, nurture, help and give hope to people just like you, who are reading this blog. I was fortunate enough to attend the inaugural conference last year and was on the Advisory Panel this year. Janssen graciously paid for my travel and accommodations to Chicago, Illinois for this year’s event.

Chicago City

Being on the Advisory Panel really pushed me out of my shell, even more than I thought possible (yes, I have a shell when it comes to real-life interactions). Here’s me talking a little bit about my story – which is a lot hard to do than write it down. It’s also hard to share pictures of myself, just so you know.

Me speaking

As a panel member, not only did I get to give my insights in the planning of this conference, I was able to take more of a leading role in Chicago and really help people who I knew were, well, feeling just like I was – nervous, alone and unsure exactly of what to do, what to say or where to go and when. It’s hard to manage chronic illness, anxiety and hey, life, at home – let alone in a strange place with people you don’t know. I am grateful for the opportunity to help others, above all else.

The theme for this year’s conference was “Deeply Rooted Connections” and aside from some of my favorite learning sessions – which included learning about video blogging with Josh Robbins, legal issues when it comes to sensitive material with Jimmy Nguyen, content creation with Amy O’Connor and the power of social media to transform the medical field with Dr. Kevin Pho – I have been spending the majority of my post-conference time thinking about my deeply rooted connections.

Friends

These people – and so many others who are not pictured here – are my strength and source of inspiration when my job gets a little tough. And before HealtheVoices – as an advocate – I had nowhere to turn when the job got tough. I was the lone blood clot blogger and I never thought of reaching out to other health bloggers for support because I did not know they existed. Now, because of HealtheVoices, I do.

Most notably, I got to meet a fellow VTE advocate and influencer in the blood clot support community: Lisa Wells of Surviving A Silent Killer (SASK).

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Lisa and I connected early on in my journey as an advocate and she has been a source of strength and inspiration to me ever since. We each run a private Facebook Support Group and while they are different, we rely heavily on one another to ensure our groups run smoothly by sharing information and resources and supporting one another in triumphs and challenges. To meet her in person was more than I ever could have hoped. Having Lisa attend the conference with me furthered my sense of community and connection to the VTE community and I know this connection – and friendship – will continue throughout this year and the years to come.

I also met a local (to me) health advocate who represents the HIV community, Kevin Maloney. Even though Kevin and I were on the planning committee together, we did not meet before the conference; although, we did have plenty of time to talk – for six months – leading up to it. At first, we talked mainly about planning committee things like, “Wait, what were we supposed to do this week?” and “Did you turn in your thoughts yet?” From there, we started talking about advocacy in general and our communities. Then, I found myself talking to Kevin about my personal story, about his personal story and about living my everyday life.

As luck would have it, we shared the same flight out to Chicago and I can say without a doubt – because we were not so lucky to be on the same flight on the way back – flying with Kevin made all the difference in the world for my anxiety for two reasons: I realized I wasn’t alone in my travel worry and well, I wasn’t alone on my flight. I know Kevin will remain a friend of mine in the weeks, months and hopefully years to come.

Avisory Panel Group Hug

In summary, I have some pretty deeply rooted connections now from attending #HealtheVoices for the last two years and I can’t to see where those roots – grow – from here.

There is hope for healing and you are not alone,

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Reader Writes In: Did you see #HealtheVoices16 trend on Twitter? Have you ever traveled to Chicago? What did you do there? Tell me in the comments.


HealtheVoices16 Intro CoverThank you to the teams at Janssen, Everyday Health and Tonic Communications for an incredible weekend at #HealtheVoices16.

To learn more about #HealtheVoices16 read #HealtheVoices16 (Why it’s kind of a big deal).

To be a part of the private Facebook community, go here, and ask to join the group. Chat with you there.

Comments

  1. http://Jackie%20K says

    That’s so awesome, I love Chicago! Only a 45 minute flight for me from Cleveland but I was of course nervous as it was my first flight and trip away from home post DVT. I wore my compression stockings and I was ok! How cool that you got to meet Miss Lisa! Thanks for all you do

  2. Beautifully written. I loved hearing your story at HealtheVoices. Thanks for sharing yourself with us.

  3. http://Ignatius%20Duggan says

    In April 2015 I suffered multiple PE in both lungs spent 10days in hospital when I met the consultant the following morning he explained what happened couldn’t tell me why but if I had waited another 24 hrs I would not be on this planet so I count my blessing and feel every day I have on this earth is a blessing as I feel as if I cheated death.

    I spent 7 months out of work and when I got back was on half days only went back full time in January 2016. In 2014 I join the musical society and was on stage one month prior to the PE. I stayed with the society and was on stage this March preforming Calamity Jane will not let this stop me from living my life to the full

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