Sharing My Patient Journey

When I was first asked to share my patient journey at the Diabetes Sisters Weekend for Women in Alexandria, Virginia I thought one thing: Why me? After all, I talk about my personal recovery from blood clots, and I don’t have diabetes. Excited as I was to explore the possibility, I returned the call to decline and said, “I think you have me confused with someone else. I don’t have diabetes.”

“No, we don’t,” was the answer I received, “We want you to speak because you do not have diabetes. We want to share a different perspective on the patient journey.” Excited by the possibility to speak to a different audience than the ones I am used to, I dove into preparing my presentation to talk about my personal journey from being a patient to being a patient advocate. I’ll be the first to admit, attending an event specific to a disease separate from the one I have was intimidating at first.

Before I went, I learned what I could about DiabetesSisters, a nonprofit organization whose mission is to improve the health and quality of life of women with diabetes, and advocate on their behalf. What I soon realized is, this resource – including the support and educational conference I would be attending – is the type of resource that the VTE community doesn’t have right now. We’re getting there, but we still have some progress to make.

Part of the support that DiabetesSisters offers is regular meetings, or in-person opportunities, to share information, experience, and support with people who have been there too. The Weekend for Women even offered support for partners of women with diabetes (Partner’s Perspective Program) and the Diabetes UnConference, which was exclusively to discuss deeply personal and sensitive issues such as the fear of the unknown when managing a lifelong illness. I soon realized how incredibly fortunate the people attending these sessions are to have this measure of support in their lives, and I immediately wanted to be a part of it.

At the conference, I shared my personal thoughts about how to navigate the path from patient to patient advocate through storytelling, and I shared my thoughts about how telling our stories can in fact lead to healing and empowerment. I also took some time to share important facts about blood clots, including risk factors, and signs and symptoms. I had several women come up to me after my talk to either share their personal blood clot story, or the story of a family member. I also had a few people tell me they had no idea they could be at risk for a blood clot, and about how they planned to discuss their risk with their doctors upon their return home.

I was invited to sit in on the workshops, in which I observed some thought-provoking discussions about how to support a spouse or loved on who has diabetes, and how to handle our worst fears when facing a chronic or long-term illness, like the fear of being incapacitated and left alone, or even the fear of death. I realized these are all thoughts I have had throughout my recovery from blood clots, and I still have some of them today. The fear of the unknown is a great obstacle for many of us, and it was encouraging to hear other people talking about it, face-to-face.

By now, you might be thinking, “Great, but I’m not diabetic, I have a blood clot, so why are you sharing this information with me? The answer is: Whether you have diabetes, have a blood clot, or have a clotting condition, we all share the same journey as a patient. We all must live day to day with an illness that might never go away. We have the same fears, the same struggles, and the same concerns. A person with diabetes might have to consider what he or she eats, and check his or her blood sugar. I have to consider what I eat and check my INR because I take warfarin. We both have to remember to take pills, go to regular follow-up appointments, be proactive in our health, and sometimes, we even have to miss out on things because our illness might take precedence over what we want to do.

What these people taught me is, no matter what the condition is, we all face the same fears, struggles, setbacks, triumphs and joys as a patient, and as a person. They taught me what I was supposed to be sharing with them: Sometimes it is easy to become fully consumed by our own disease and our own situation, but in fact, there are people all around us who can relate to what we have gone through, or what we are going through. As a blogger, and as a patient advocate for the VTE community, I become very consumed with that, because it is my passion, but it’s important to remember that I truly am not alone, even when I look outside of this community.

Below are some some resources that I want you to have. If you have diabetes, or if you want to begin your journey from patient to patient advocate, explore the links below for some essential tools.

Extra Diabetes Resources for You:

Did you know? Long-term diseases like diabetes are a risk factor for life-threatening blood clots. If you have diabetes, I would love to connect you with some of the resources and bloggers from the DiabetesSisters Weekend for Women.

DiabetesSisters
Blood Sugar Trampoline
Below Seven
Diabetes Mine
Yoga for Diabetes

Patient Advocacy Resources for You:

Did you know? Anyone can become a patient advocate just by sharing their story. Below are some resources to help you get started.

Charting Your Own Patient Journey (my slideshow from the conference)
How to Raise Blood Clot Awareness: Discover Your Personal Plan
Sharing Success as an Online Health Blogger
From Make-A-Wish Employee to Making One of My Own Wishes Come True

There is hope for healing and you are not alone,

 

 


Reader Writes In: Are you dealing with other health conditions besides blood clots? Where are you on your own patient journey? Where would you like your journey to take you?


Are you new here? Welcome to BCRN. Here is my story and more about me.


Are you worried that you might have a blood clot? Here is how to talk to your doctor.


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BCRN is Leaving on a Jet Plane to #HealtheVoices15

When I started this blog just about three years ago after suffering from DVT and PE that almost ended my life, I never imagined it would turn in to what it is today. I never imagined anyone would read it beyond a select few. I never imagined how my readership would grow to countries all around the world, including far away places like Australia and Israel, and that I would make friends in those far away places. I never imagined a Facebook community or the chance to connect with so many of you who have shared the same struggles as I have. I definitely never imagined it would lead to some great partnerships with people like NASCAR’S Brian Vickers and actor/comedian Kevin Nealon. And I never imaged I would be working in collaboration with the National Blood Clot Alliance and the International Society on Thrombosis and Haemostasis to raise awareness around the world in an effort to save lives.

I also never imagined my work here would bring me to a the HealtheVoices Conference in New Jersey this weekend, April 17-19.

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The conference geared at bringing together online patient health advocates (like me!) to help further grow and engage online patient communities. And, as you can imagine, I am really excited about that. Despite my fear of flying, I’m following these travel guidelines and leaving on a jet plane to New Jersey, and I am on my way there right now.

I’ll be learning about things like protecting against compassion fatigue (which is a very real concern and very pertinent for me right now), learning how to provide you with the best support through writing blogging and social media (which I already love to do), how to measure success online and things like how to provide the best support to an entirely virtual community, including changing the culture of medicine though social media. I’ve had a sneak peak of the other attendees and I am also very excited to connect with other advocates discussing other crucial health issues such as diabetes, lupus, mental health and rheumatoid arthritis among others.

You can follow me on social media this weekend using the hashtag #HealtheVoices15. Join the fun and be the first to see what;s happening on Facebook and Twitter.

Thank you all for your support, encouragement and for making this blog what it already is today. I can’t wait to learn some new skills, find out about new resources, connect with other online health advocates and share it all with you!

There is hope for healing and you are not alone,

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The HealtheVoices conference is hosted by Janssen and Everyday Health and Janssen paid for my travel expenses for the conference. All thoughts and opinions expressed here are my own.