One of the things that I find has made training for the NYC Marathon more manageable is having a good team. It’s more than just having loving friends and family encouraging you every step of the way (although of course this too is crucial). It means having someone by your side who is also having the same experiences.
Lucky for me, I am not training for my marathon solo. I have a very good friend running the same training program, and she struggles with the same runs each week. We keep each other accountable, and I know that if she’s tackling the training runs with her equally hectic work schedule and personal life, then I can do it as well. We can vent to each other about how we’re sore, or about how that week’s run was much harder than the rest…
…in short, it’s that feeling of community and shared experience that make the entire experience more enjoyable. I know that I’m not alone. And I know that together, we can both finish this thing.
Similarly, one of the most important things I’ve realized through my deep vein thrombosis (DVT or blood clots) recovery is the importance of community. DVT and pulmonary embolisms (PEs or blood clots that have broken off and gone into the lungs) are actually fairly common–one person dies every six minutes from blood clots, which adds up to more deaths in America than HIV, breast cancer, and car crashes combined!
But because there are so many of us, I’m slowly realizing there are actually a number of very helpful online communities to discuss treatment options, medications, fears, recurrences of blood clots, and even running tips.
When I was first hospitalized in Malaysia and Tokyo, I felt so alone. I had heard of DVT, but I honestly knew very little. I was overwhelmed and in a foreign country, and none of my friends had ever experienced a blood clot. It was all new, and I didn’t know my options or understand what was happening. And while I spent countless hours reading different medical journals or articles explaining the science behind what was happening to my body, I wish now that I’d spent more time interacting with other people who had experienced something similar.
Reading about other people’s experiences:
(1) educates me.
Although doctors, news, and medical journals/articles have been able to explain a great deal of what is and has happened to me, it’s been incredibly helpful to hear from others who have many more years of experience. Science is continually progressing, and I’m hopeful that treatment options will continue to expand and be perfected over time.
But there’s a lot science doesn’t know. I’ve learned there are likely more genetic clotting factors than have currently been discovered. I’ve learned that the medications that work for me now may not work in the future. I’ve learned that exercise/running certainly helps in recovery, but it’s unclear how much we can push our bodies and unclear just how much this can affect post-thrombotic syndrome (chronic pain and swelling) long-term. I’ve learned that it’s unclear why some people get post-thrombotic syndrome and others don’t.
And while a community of individual experiences cannot itself provide definitive answers, it can help broaden your general awareness of potential outcomes. Knowledge gives you the power to better manage your condition.
(2) inspires me.
More importantly, I’m inspired and constantly amazed by everyone. There were so many times I struggled–struggled to stand, struggled to walk, struggled to run. But for every struggle I felt and every bit of frustration I experienced, there are a dozen more success stories. Again, I wish I had been better aware of these communities a year ago, but even now–almost two years out–I feel motivated and inspired to see my fellow Clot Busters racing triathlons, running marathons, and doing whatever else it was they were doing before they got sick.
I encourage anyone that’s struggling to do the same. It’s so easy to feel down on yourself when you can’t do what you were once able to do, but talking to others and reading success stories made me realize that if they could do it, I could too. Very little cannot be accomplished from sheer determination and continued efforts.
Here are a few of my favorite communities–
Facebook: Running after a Pulmonary Embolism
A great community of post-PE/DVT runners who post their success stories, questions, advice and latest news. Everyone is incredibly friendly and quite responsive. This is an amazing and inspiring group of people that just won’t quit and won’t take no for an answer!
Roland Varga maintains an Athlete of the Month post, where he shares that individual’s DVT/PE story, their recovery, their advice, and their current progress/training goals. There are over six years of monthly athletes shared on this page, and there are sure to be a few that resonate with your experiences and will motivate you to keep going. He’s been kind enough to feature me for August!
Facebook: Thrombosis Support Group (Clots, DVT, PE, stroke, phlebitis, clotting)
I’m new to this group, but this is another very active community of more great people who are also recovering and learning more. Some members are able to draw on years of experience, while others are just beginning to adjust to post-thrombotic life.
Daily Strength: Deep Vein Thrombosis & Pulmonary Embolism Support Group
Another community of clotters that offers support and comfort for those who are experiencing or have experienced a DVT/PE.
At the end of the day, it doesn’t really matter where you go to find your community. What’s important is realizing that you are not alone, and that your goal of getting back to — no, exceeding — where you used to be physically is possible!