Sharing Success as an Online Health Blogger

online health blogger

When I started this blog five years ago, I had no idea that it would become what it is today. I had no idea how much it would mean to people, how much it would help them, or how vital it would be for some people. I had no idea that I would become the leading patient resource on blood clots and recovery. I actually had no idea that I would become an online health blogger. Back then, I was just a person, writing about my experience with blood clots, with the hope that someone, somewhere out there wouldn’t feel alone during recovery, like I did. If my words reached one person, I would be happy. Now, I know that my words have reached thousands of people, in every corner of the world, and have undoubtedly helped just as many. All those years ago, I had no idea I would meet so many people, share so many stories, or take part in many of the wonderful opportunities that have come my way.

A New Direction

I’m not new to blogging – nor was I ever – and I have background as a fitness blogger, which stems from my talent for writing. One could argue that I am not even new to successful blogging in terms of followers, readers, and opportunities. Technically and strategically, I knew what I was doing when I started this blog, and my passion to help make a difference in the lives of blood clot patients guided me from there. What I was new to, though, was online health blogging, and providing support for people who are going through a really, really difficult health crisis, perhaps the worst crisis of their entire lives. What I was new to was the amount of time and energy it would take to not only write about my experiences, but help other people through their experiences.

Providing Reliable Patient Support

Soon into my journey, a transition happened. I was catapulted –at lightning speed – from the role of blogger into a support and advocacy role that I never intended to be, and one that I never knew existed. Probably because I had never dealt with a significant health crisis before my DVT and PE, which almost ended my life at 29 years old in 2012. I never anticipated the time, energy and dedication that would come with this transition. I work a full-time job – in the same space, often providing patient support – and I spend hours every single day here answering questions, messages, comments and emails. I spend hours researching resources for people, compiling tools, telling my story, and sharing information. I’m not a doctor, and I’m not a healthcare professional, yet Blood Clot Recovery Network is often the first place someone turns for answers and support. I mostly can’t provide those answers – I’m not medically trained – but I can provide connection, community, encouragement, and I can lend an ear free of judgment and full of understanding.

Clinical empathy – or the skill of understanding what a person says and feels, and effectively communicating this understanding back to that person so that they too understand – is a gift that I am fortunate to have, and to share with all of you. I believe it is one of the reasons why I am so successful here. Clinical empathy – or even empathy – can also be a burden, if not properly harnessed. I am a compassionate and open-hearted person by nature. “No” or “I’m not able to do that right now” are hard phrases for me to insert into my vocabulary. I am more of a “drop everything and do it right now” person who wants to be all things, to all people, always. However, that’s not realistic, and it’s certainly not sustainable.

Being an Online Health Blogger is Not Easy

Creating consistent and reliable blog content that people can relate to, understand and appreciate is not easy. I may be a good writer, but a blog post does not come about without a lot of effort and forethought – it’s why so many bloggers simply do not stick around. Social media fatigue is real. On average, people check their phones 150 times a day. I am sure I exceed that on many days. The Internet never stops – for any of us. Online, people instantly notice if you are off your game, or are absent for any length of time. People sometimes don’t realize that there is a real person behind the screen, that struggles with the same things they do. We are all judged online for what we do and don’t do, more so I believe than we are in person. Demand for personalized attention and communication can be draining. Sharing our stories about such intimate matters as our health is both draining and demanding, and our energy reserve functions exactly like the bank where we keep our money. You can’t withdraw what you don’t have. It simply does not exist.

Sharing Success as an Online Health Blogger

As an online health blogger, I thrive on providing support and encouragement, and on sharing experiences, but I also need to make it a priority to replenish my reserves. I would not be happy, or fulfilled, if I didn’t have somebody to help through recovery – and let’s face facts – I probably could not live without the internet for any lengthy amount of time, but I have in lived through worse, so who knows. It’s a delicate balance – when helping is both your give and your get.

The truth is, you have helped to make this space what it is today by following along in the first place, and together, we are sharing success. You put the money in the bank, and now, you replenish my energy with your well wishes, positive comments, and willingness to go above and beyond to help one another. You support one another, and step in on social media, and in blog comments when I am not here. Above all else, you share your stories, just like I did all those years ago. For every note I receive about how much I have helped to make a difference in someone’s life, I also receive one about how wonderfully supportive you are.

I would not be where I am today without you and for that, I am extremely grateful. It is because of you that I continue to do what I do here, despite long hours and extensive work. You are the reason I put so much of myself into this, and you are the reason I will continue fostering healing, community and yes, even awareness about the life-altering effects of blood clots. My work here is far from over. Your work is far from over. We all have a story to tell, and we all have something to invest in the bank.

To you I say thank you. Thank you for being a part of Blood Clot Recovery Network, and for reminding me every day of why I began this work, why I do this work, and why I will continue this work.

There is hope for healing and you are not alone,

 

 


Reader Writes In: How has BCRN helped you through your recovery? How do you make a difference online?


This post is a reflection of my thoughts after attending HealtheVoices 2017, an in-person conference that brings together online advocates from a variety of health conditions for an opportunity to learn, share and connect. For daily conference happenings, search #HealtheVoices17 on social media.


Janssen paid for my travel expenses to attend the conference. All thoughts and opinions expressed are my own.

#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.

HealthEVoices16 (Why It’s Kind of a Big Deal)

HealtheVoices16 Intro Cover

It’s no secret — especially for those who know me in person — that I am terrified of flying on planes. It’s also no secret that my fear doesn’t stem from long periods of sitting that may contribute to my blood clot risk – I really don’t think about blood clots when I am flying, even thought I regularly stretch my legs and request a Pre-Boarding Pass so that I can get an aisle seat. My fear is rooted in the fact that I am not in control of the plane, nor am I in control about what happens to it. Lack of control — combined with the fear of the unknown — will keep me up for days prior to any plane travel I have scheduled.

ae945163-1d80-44d0-97b1-5bbb85604e2eYet, in less than one week, I will board a plane to travel to Chicago for the 2016 #HealthEVoices Online Patient Advocacy Conference – and I could not be more excited about going. I was fortunate enough to attend the inaugural conference last April as the only VTE patient advocate and this year, I was invited by Janssen to not only attend, but to be a part of the planning committee as well. Janssen is graciously paying for my travel (flight, ground transportation) and my hotel stay while I am there.

So, you might be wondering, aside from the plane trip, what’s the big deal?

Well, first let me tell you about HealthEVoices16. It is a conference created by Janssen in partnership with Everyday Health for people like me to make an even greater difference in the lives of people like you. Since you’re here, you probably have a good handle on the fact that social media (Facebook, Twitter, blogs, websites, online discussion forums) is largely shaping the way patients and caregivers make decisions about healthcare for themselves and for their loved ones. HealthEVoices is the only conference created exclusively for online health advocates across a broad spectrum of health conditions. The mission of the weekend is to provide the tools, resources and inspiration to improve online patient and caregiver communities and expand reach even more. Attendees will have the opportunity to interact with other health activists and learn from experts in health, social media and advocacy. You can find out more about this year’s event and watch a pretty cool video here: HealthEVoices16.com

HealthEVoices_logo_outlines

When I stared this blog almost four years ago, I felt very much alone in my recovery from blood clots. As I began to process and understand the difficult journey that was ahead of me, I wanted nothing more than to reach out to others who might be feeling the same. I wanted to give others who experiecned a blood clot guidance – and ultimately hope – in what might be the worst time in their lives, so I created Blood Clot Recovery Network. As time went on and I felt less alone in my recovery, thanks to the robust community that you have helped to create here, I started to feel alone again, but in a different way. I felt alone as one of the few DVT and PE blood clot advocates. When I attended HealthEVoices last year, I found myself at another low point in my life. I was turned down for a job I wanted then, I was struggling to continue making a difference here at BCRN and I felt like I had nowhere to run to (save for nature and a weekend away) when I was overwhelmed with inquiries, requests and stories. On top of it all, I started to feel guilty for thinking about myself, feeling like I was letting the community down. I went to HealthEVoices a wreck, and not just because of the plane ride.

I still cannot believe how much one weekend changed my outlook on patient advocacy and gave me the tools I so desperately needed to continue doing the work I do at BCRN – and do it happily. I gained some valuable isights to combat compassion fatigue, tools to handle patient inquires in a wise and legal manner and information to establish or maintain a successful entrepreneurship and not “just a blog.”

More so than the tools and information I gained, though, were the connections I made. I connected with other advocates from a variety of different health conditions (oh yeah, I have social anxiety too so that was hard) who were going through the exact same things I was – despite our different illnesses. I wasn’t alone after all, I just didn’t know it. I left the conference last year feeling immediately empowered, newly invigorated and re-committed to my work as an advocate here at BCRN. I had some extra time before I flew home and I even took the train by myself into NYC and crossed a dream off my bucket list — visiting Central Park. <<P.S. the worry on my face is the result of hoping a) I make it back to NJ on the subway b) I don’t miss my flight and c) I don’t get lost in NYC>>

HealtheVoices16 Intro post NYC Central Park

This year, I cannot wait to re-connect with people I met in New Jersey last year, many who have become a source of daily support to me since that time. They include Debbe of the AFib Support Forum, Jill of Get up and Get Moving and Brian of A Marine and HIV. I’m also looking forward to connecting with Kevin of Rise Up to HIV who is not only a neighbor of mine, but a source of support and laughter for me during the planning process – especially when it comes to addressing my flight anxiety.  

I cannot wait to meet new people. I am beyond excited to – finally – meet another VTE advocate in person, that person being Lisa of the widely recognized Facebook Patient Support Group Surviving A Silent Killer. Lisa and I met virtually a couple of years ago after facing similar diagnosis and we, along with a few others, work closely together in terms of keeping our Facebook groups a safe place for all of you to be. The fact that she and I will be at HealthEVoices together solidifies in my mind that we will be able to collaborate even more to provide you with the best support and patient resources available. And, of course, I cannot wait to meet even more advocates representing other communities.

<<< Insert future picture of Lisa and I here >>>  

I cannot wait to make BCRN the best online patient support and advocacy community it can be for people recovering from blood clots.

Reader Writes In: What do you wish you had in terms of patient support from BCRN? How can I strengthen this community for you?

There is hope for healing and you are not alone,

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