How to Raise Blood Clot Awareness: Discover Your Personal Plan

March – Blood Clot Awareness Month – has been a very eventful month for our community. This month has provided us with an opportunity to come together as one not only to raise blood clot awareness, but to share stories, ideas, and life-saving information about blood clots. This month, I have read countless stories from you. There have been stories from people who are celebrating survival and stories from people who grieving the loss of a precious loved one. I have spoken to people who had no idea that a blood clot could affect them, and I have spoken to people who work hard every day to share information about blood clot risks and signs and symptoms. I have spoken to people who are newly diagnosed with a DVT and/or PE, and I have spoken to people who have been battling blood clots for years. Some people have reached out for reassurance and support, while others have reached in to give back to the community that has helped them. Some people are scared, hurting, and overwhelmed, and others are joyful and reassuring. Some people are healed, some people are not. Some people are at the beginning of their journey, while others have not even stopped on their journey to look back until now.

What this month has done is brought us all together, in one place at one time, to raise a united voice about an issue that has deeply affected us all, in one way or another. And believe it or not, people are listening. You can see it in the comments, the shares, the likes and the readership here, and in all the other communities you are all a part of. If you doubt, simply type #BCAM into a social media or internet search bar, and see all the conversations that are have taken place this March, and are taking place right now (it’s not too late to jump in on any of them, either).

On this last day of Blood Clot Awareness Month, I want to leave you with something everlasting, something that you can take with you into the days, weeks, months, and even years ahead. Just because March is over, does not mean we should stop communicating, connecting and sharing about blood clots, or how they have impacted our lives. In fact, it is my hope that we use the momentum this month has created to continue talking about the issues that affect us all, and to continue alerting people who don’t know, about how dangerous blood clots are. Not only that, it is my hope that we continue to bring awareness to blood clots, and we continue to support the organizations, groups and communities that can effect change to ensure no one ever stops talking about blood clots, an often-overlooked public health concern. It is a concern that indeed affects us all.

Along with these thoughts, I am leaving you with a personalized plan for raising blood clot awareness. Anyone can do it, and anyone can make a difference. In fact, you already have. These are the things I did to start talking about blood clots, and today, my work here reaches over 25,000 people a month. Over 1,000 people a month receive my newsletter, and nearly 5,000 people connect with our community on Facebook every day. The good news is, you don’t have to start a blog or have a thousand followers to raise awareness. You can raise awareness where you are right now, with what you already have, regardless of what month it is, in just three simple steps. Here’s how:

 Step 1: Find your passion

After my blood clot, it seemed that my entire life fell apart. Everything in my life suffered – my job, my relationships, my health, and my happiness. I lost everything, and I had no idea how to get it back. I felt alone, scared, worthless, and even self-destructive at times. I was fighting a losing battle, and nothing anyone said or did, including myself, could make it better. It was the worst I have ever felt in my life.

I spent a lot of time trying to figure out what purpose any of my suffering had, and what my purpose in life was. My attempts to discover this was futile, leading me to one dead-end answer after another. There was no justification for the suffering I was going through. There was no explanation for why I had lost everything. There was nothing I could possible give back to a body – and a world – that had treated me so cruelly.

Then one day, I stopped looking for a purpose, and I started listening. I wasn’t the only one who had been through a DVT and PE diagnosis. As it turned out, there were a lot of people out there who had also lost everything, just like me. There were a lot of people out there who had no idea what had happened to them, or why. Things started to shift in my mind, and I began to focus on what I believed was my passion: Helping other people through a blood clot diagnosis and recovery. I became determined to be the guide that I wished I had after my experience. I started Blood Clot Recovery Network – not even sure if anyone would read it. But, people did read it, a lot of people, and my work here continued to grow. Over the years, my work here has led to speaking engagements, freelance writing opportunities, advocacy events, and eventually, my career in the same field.

When I look back from where I am now, to where I was then, I still cannot believe one thing sometimes: My passion to lead me to my purpose.

If your passion leads you to blood clot awareness, you can: Talk about your experience, write about your experience (publicly or privately), tell everyone you know about blood clot signs and symptoms, tell everyone you know that they could be at risk for a deadly blood clot (and tell them why), educate other people about how to prevent blood clots, and get involved with patient advocacy groups programs and services. With the far-reaching impact of social media today, anyone can make a difference, and anyone can share their story. By sharing our stories, we share facts about blood clots. Facts that matter. The possibilities are virtually limitless. Use your social media platforms – and your voice – to make a difference. Do as much – or as little – as you can or want to.

Step 2: Let nearly everything that you do be to help someone else   

After my blood clot diagnosis, I felt worthless. It is hard for me to describe just how worthless I felt, in fact. It was unlike anything I had felt before, or anything I have felt since. I thought it would never get any better, and I thought there was nothing I could ever do to feel self-worth again. To sum it up, I couldn’t figure out what I had not died, because I had no reason to live anymore, I felt so hopeless.

Slowly, and not without pain and heartache, I started to realize that I was not worthless, and there were things I could do. These things came primarily in the form of helping other people, and were things I was already starting to do. Whether it be sharing my story, sharing my experience in an online forum, telling someone about what my PE felt like, or simply letting someone else know I felt the same, hopeless way that they did – I was helping someone else. How do I know that? People started to tell me, even a simple “Thank you,” is evidence that you have made a difference. People would say, “I didn’t know this could happen to me!” I started to realize, that because of me, now they did know a blood clot could happen to them. Never underestimate the power of helping another human being, especially during their darkest hour.

Ways you can help other people: Share your story, share information about blood clots, share information about recovery, tell your friends and family about what you are going through (if they don’t listen – that’s okay – they can save this for later), get involved in online support groups and forums, and tell your doctors about what you are experiencing after a blood clot diagnosis.  

Step 3: Always remember that there is hope for healing from blood clots

Each day, I talk to numerous people who are at different stages of their recovery. Some people are at the very beginning – they don’t even know they have recovery to do – and some people are far, far removed from the horrible things that happened to them – yet, they still have a story to tell. Some people have been recovering for a week, while others have been recovering for three years. Each of us is different.

I am often asked, “How far are you in your recovery from blood clots?” It has been four, almost five, years since my DVT and PE, and now, I consider myself healed. Sure, I will always have medication to manage and things to take into consideration that I never did prior to my diagnosis, but I am through the hard part, and I have seen that there is life – and purpose – on the other side of blood clots. There is beauty and healing and compassion and freedom from pain and suffering.

For some people, healing takes a lot longer, and still some people seem to struggle their entire lives. I don’t believe everyone moves through recovery with the same outcomes, but I do believe there is hope for healing. That healing might not look the same for all of us, but it is there.

What helped me heal more than anything, was helping other people heal. Each day, I try to remember that in the work that I do. Helping other people is healing – for me and hopefully, for them too.

What you can do to help people heal: Share your experience, share your struggles, share your joy, let other people know they are not alone, invite them to join you in the online groups and communities, set up a weekly check-in email or message with someone you have connected with, and learn as much as you can about blood clots.

There you have it, your personal plan to raise blood clot awareness and to share life-saving information about blood clots. Take this information, think about it, and begin making a difference when and where you can. You are a valuable person, you have a lot to contribute on this subject. We all do. When you have been affected by something like blood clots, awareness is ongoing. There is not right or wrong way to do it, when it comes to your personal story. I know you can and will make a difference, because you already have.

There is hope for healing and you are not alone,

 

 


Reader Writes In: How are you going to raise awareness? What is a part of your personal awareness-building plan?


That’s Called Hope: A special message for you during Blood Clot Awareness Month


Want more BCAM information? Find out why blood clot #AwarenessMatters.

 

Comments

  1. Good stuff, Sara! I used this past month to share a series of “Blood Clot Facts” on my personal Facebook page, beginning with my personal story in the first post, followed by a “factoid” every several days. I didn’t think to do it until after March 15th, so I missed some time, but I worked 6 posts into the last two weeks (didn’t want to be overly one-topic-focused). I am so pleased about the many positive comments (on FB and in real life) I received, thanking me for the information. And 2 friends ended up going to their doctors to check out symptoms they had previously been ignoring. One turned out not to have a blood clot, and the other one was a DVT. Yikes! I am glad I opened their eyes to this.

    My passion is all about living my BEST possible life. After my DVT/PE in 2014, it took me a while to really let it sink in that I could have died. The docs told me I was “on the brink” of a massive heart event… I just brushed it off and took my warfarin… but at some point, it really hit me, and it was quite sobering. As cliche as it sounds, it was a wake-up call… ever since, I’ve been living with the purpose of being alive, but even more than that: BEING ALIVE!!! (As in, enjoying and embracing my wonderful life!)

    I am forever altered physically (PTS), but I’m actually grateful for the call to step up to a fuller life. And I try to use this passion to create awareness about blood clots and healing from them. Grateful to you, Sara, for all you do!!!

  2. Just wanted to say thank you to you Sara for helping to bring some calm to our storms.I have been so helped and encouraged by all of this. I also was one of those who not only once but twice have had this journey. The first time 16 years ago and then about 3 years ago. The first time I didn’t have the education and info I now have nor the more detailed causes for why this is a part of me.The second time was my definite wake up call to get myself in gear. It was even more real as to how blessed I am to still be here in this moment. Every breath and step is a gift. We each have to be our own advocates and also share our experience because just maybe the right person will know they are not alone. We needed to find answers, self educate and use resources like BCRN for ourselves and to point others to. No one but ourselves can see and feel what we are going thru having our lives changed by this. It often isn’t obvious because we “look” fine. I can’t even count the number of times I heard that after my event. Yes, when it hit me how seriously I was affected it did send me into a time of darkness. Maybe this was my way of mourning for myself and how unspeakable my feelings were. My break thru to finally speak my truth cam when my son pushed me to name what it was as he could tell I was holding it all in and back. It’s wasn’t pretty and very scary but he is my hero for making me push thru to see and name my fear. Even as I write this I am crying in the reality of it all. But I am ok, stronger and far more aware of so much more than before. I am so grateful to be so blessed each day. I am so grateful to you Sara and the many other who share their story of recovery and embracing life. Thank you!

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