Reawakening My Inner Hemophilia Advocate During COVID-19

Reawakening My Inner Hemophilia Advocate During COVID-19
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In the past month, it has been hard for me to focus on hemophilia advocacy efforts, which normally are a burning passion. Disappointment over an opportunity to work more deeply with the hemophilia community that didn’t pan out and COVID-19 realities have me pulling back.

Advocacy work often means putting yourself out there in the spotlight to educate and empower others. Mostly, this is an experience I find immensely rewarding and energizing. But I was burnt out.

I did it to myself.

In the week leading up to the opportunity with the hemophilia community, I averaged less than four hours of sleep a night. I spent hours and hours preparing and overpreparing for a presentation. I spent a weekend in a fun city and mostly stayed inside, critically analyzing everything.

I overthunk it.

That’s an understatement, actually. I criticized every minute detail until I deemed the presentation “perfect,” and I lost sight of allowing my personality to shine through to show them me. Overthinking can be paralyzing. The compounded sleep loss during the week didn’t help. I wanted it so badly, or so I thought, that I disappeared in the process. 

It was an important lesson. I may not have progressed with the possibility regardless, but the extent to which I overprepared and overinvested was self-sabotaging in the end. This was a critical lesson I have promised myself I will walk away with. I will still pursue amazing opportunities with great passion and drive, but I will work to maintain balance, get enough sleep, and allow myself to shine without my inner critic self-censoring things.

After this experience, which I brought on myself, I needed a break. I wasn’t ready to jump back into advocacy work yet.

COVID-19 complications

This experience was immediately followed by the realities of COVID-19 hitting the U.S. and spreading, causing immense disruption in our lives. I had great plans for what I would do during this time. I would make the most of having to work from home and channel the time I previously used for my commute into exercise and renewed volunteer and advocacy work.

It has been one month. I have done less advocacy work than I normally do, and have exercised significantly less than I did prior to COVID-19. I know I am not alone, as many people find themselves hitting a slump.

What my daughter first referred to as her “coronacation” from school life has morphed into missing her peers and instructors and wanting to connect. I miss the connections and routine, too.

As I focused on those missed connections, it helped me to find renewed passion. I do not want to let this time go to waste. I am hopeful that I can contribute something meaningful to my community while working from home during shelter in place.

Through the years, tremendous advocacy opportunities have presented themselves to me remotely. I have reached out in a multitude of ways and assisted many women as they have searched to find their voice in the struggle for appropriate diagnosis and treatment. I can reach out by writing on multiple social media platforms and via email, and join video discussions. Groups now convening virtually are a great way to offer support and guidance.

The advocacy continues

Advocacy work does not need to stop, even as our lives have been tremendously changed. To meet changing needs, advocacy morphs and has the flexibility to meet individuals where they are.

I am so fortunate to be part of the hemophilia community. It is a dynamic group of individuals who support each other in myriad ways. I am also fortunate to be part of a growing group of women who are finding their voice as they learn that they, too, have a right to a proper hemophilia diagnosis and treatment. My network of blood sisters means so much to me. 

We will have disappointments in life and circumstances that throw us curveballs. It is normal to react. Sometimes these moments draw us away from the volunteer work we are so passionate about. Growing through these moments allows us to strengthen our resolve to return and continue the advocacy and education necessary to change the medical trajectory for individuals who desperately need it.

I am proud to advocate for women with hemophilia. I want them to receive appropriate care. Until I know my blood sisters are getting the treatment they need to live safe, healthy lives, I will not stop. Renewing this resolve is revitalizing.

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Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.

Shellye Horowitz is a licensed school counselor and school administrator with over 25 years of experience in education. Shellye has strong ties to the bleeding disorders community with six traceable generations of hemophilia A in her family. As a woman with hemophilia, Shellye feels fortunate to have obtained a correct diagnosis and access to care, albeit later in life. Her desire is to spread awareness that women also have hemophilia and need appropriate and equitable care. Shellye lives in Northern California, where she and her dog, “Hope,” love to play on the beach and wander through the majestic Redwood forests.
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Shellye Horowitz is a licensed school counselor and school administrator with over 25 years of experience in education. Shellye has strong ties to the bleeding disorders community with six traceable generations of hemophilia A in her family. As a woman with hemophilia, Shellye feels fortunate to have obtained a correct diagnosis and access to care, albeit later in life. Her desire is to spread awareness that women also have hemophilia and need appropriate and equitable care. Shellye lives in Northern California, where she and her dog, “Hope,” love to play on the beach and wander through the majestic Redwood forests.
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