4 Lessons Hemophilia Taught Me About Making the Most of Life After Lockdown
World Hemophilia Day, observed on April 17, serves as a reminder to all of us that we must adapt to health challenges and other life setbacks, including those brought on by the COVID-19 pandemic.
During the past year’s lockdowns, Americans got a taste of what it’s like to live with a chronic disease — in the sense that our daily lives and movements have been limited or restricted by something outside our control. Now, with the vaccine rollout and the U.S. beginning to open up, those limitations are slowly being removed — but not fully for those of us with chronic diseases like hemophilia.
Like the rest of the population, those of us with hemophilia will soon be able to get a haircut, go to a restaurant with friends or see a movie. Many of us will plan vacations for the first time in a year, and look forward to packing their bags for exotic destinations. For those with a bleeding disorder, traveling will still be hard, as a bleed can happen at any time. As a result, we’ll have to pack our vials of factor medicine, diluent, reconstitution device, syringes, disinfectant and containers, and make sure we have a travel letter that helps smooth our passage with these items through airport security. We’ll need to ensure we wear our MedicAlert bracelets, and that we’ve pre-researched a list of hospitals at our destination in case we have an unexpected bleed that leads to a medical emergency.
The hemophilia community has faced many setbacks in recent decades, most notably the contaminated blood crisis of the 1980’s and 90’s when people contracted AIDS and hepatitis C through transfusions from tainted blood products. Even with the advances in care of the last 50 years, maintaining our health remains a challenge.
How have we continued to rebound after so much adversity? We’ve developed tools for living to carry us through our darkest moments. I believe the following four strategies can help anyone facing a debilitating chronic condition, or the challenges of the COVID-19 pandemic — be it feelings of isolation, depression or health fears.
1. Use your imagination and creativity
My childhood was filled with bleeds, lengthy hospital stays and recuperation periods of isolation, leading to loneliness and even depression. I turned to my imagination to fight suffering. My passion for Dungeons & Dragons (D&D), the popular role-playing game, enabled me to escape into magical worlds and travel on epic adventures to exotic locations to complete amazing quests in worlds filled with knights, wizards, orcs and dragons. As I grew up, I continued to refine my creative process, earned a Master’s in Religious Studies and ultimately wrote and published a graphic novel about my life.
My mentor, Val Bias, longtime CEO of the National Hemophilia Foundation and my counselor at summer camp for kids with bleeding disorders, often spent his entire summer in the hospital as a youth — getting out just in time for school to begin again. Val immersed himself in TV shows about exploring the galaxy and delved into the intricacies of chess and checkers. His grandmother taught him how to iron and to sew, which has remained part of his creative expression to this day. Find a creative outlet that interests you and immerse yourself in it, be it art, gardening, cooking or music it is an excellent way to escape or drown out the pain and loneliness you are experiencing.
2. Create a support team
One of the most valuable resources for me has been a trusted support team of friends, mentors, family and medical professionals — a team I share my struggles with and who help advocate for me when I can’t. D&D helped me create a support team of friends whom I brought into my confidence at a young age.
As a teen, I was forced to confront my HIV positive status in 1984 after being exposed to the AIDS virus from contaminated doses of factor concentrate used to treat my hemophilia. At this same time, Ryan White, a teen boy with hemophilia, whose AIDS status became publicly known, was experiencing horrible discrimination. Ryan and his family fought to educate the general public and secure his right to attend school. Through witnessing Ryan’s bravery, I decided to share my HIV status with a friend at a sleepover after a D&D game session. Disclosing my HIV status only made the friendship stronger. My D&D friends remained part of my support team through each challenge I encountered — from hemophilia to HIV/AIDS, hepatitis C, liver disease and ultimately a liver transplant.
Connect with the people around you — your friends and loved ones and those you trust — to form your support team. Educate them about your situation, share your experiences and challenges and ask for their support.
3. Don’t let a disease or a setback define you
Take control of your situation and decide what is best for you. In my hemophilia journey, this has meant becoming my own medical advocate. Doctors and other medical professionals are important members, but in the end, I must lead the team. While it’s easy to let your doctor decide how to treat your condition, you are the one who must live with those decisions and you need to participate in the process. You must educate yourself on your own situation, be it medical challenges, options for treatment and management — and then you must advocate for the course you want to take.
I have found much of the strength needed to become my own advocate in the lessons of Val, who counseled me and the other kids at bleeding disorder camp to not let hemophilia define us. Instead, he said, “express your true character in the way you choose to face and overcome hemophilia’s obstacles.”
4. Put one foot in front of the other and you’ll eventually reach the summit
My father always told me this growing up, encouraging me to keep moving forward. For Val, coping meant experiencing a bleeding episode or a long rehabilitation and pressing on — just like a basketball player who misses a shot, but keeps shooting without allowing fear to control the path of the next shot. Having that single-minded, focused approach can make you successful at achieving your dreams.
Whether you are facing a chronic condition, navigating your own or a loved one’s medical odyssey, or dealing with the loneliness of the pandemic, you have the tools and the power within you to face any challenge.
Even as COVID-19 vaccination efforts gather speed and life promises a return to “normal,” we must not lose sight of the need to address the struggles caused by chronic illnesses, such as hemophilia. Just as we must continue to invest in chronic and infectious disease research and ensure we have adequate vaccines to address COVID-19 or any potential future health threat, we also must continue our quest to overcome the obstacles of hemophilia with increased research and treatment options.
About Jonathan Hill:
Jonathan Hill was born in 1969 and diagnosed with severe hemophilia A in 1972. In the 1980s, Jonathan learned that he had been infected with hepatitis C and HIV from contaminated blood products. Later, he developed severe liver disease, undergoing a liver transplant in 2017. For several years before his transplant, Jonathan sought a creative outlet, writing about his experiences on Facebook. The response was huge. Family and friends shared how his posts helped them better identify with the struggles of people with rare diseases. Over time, he compiled his writing into a memoir, “Blood Brothers: A Memoir from the Lost Generation of Hemophiliacs.” After a meeting at the National Hemophilia Foundation (NHF) 2019 Bleeding Disorders Conference, Jonathan partnered with BioMarin and Believe Limited to create a graphic novel illustrating his journey.
About Val Bias:
From 2008 through 2019, Val Bias, who also lives with hemophilia, led the National Hemophilia Foundation to the forefront of the healthcare reform debate on such issues as the elimination of lifetime caps and pre-existing conditions with insurers. In addition, he greatly expanded the NHF’s research agenda and created the Women’s Health and Bleeding Disorders Institute to address the growing needs for awareness and treatment for women with bleeding disorders. Before becoming CEO, Bias maintained a long history with the National Hemophilia Foundation from his service as NHF’s Board Chair in 1992 to his tenure as volunteer, consultant and lobbyist/advocate for NHF — culminating with the passage of the Ricky Ray Hemophilia Relief Act of 1998. He has interfaced with key decision makers in executive and legislative branches of federal government and has long-standing working relationships with such federal agencies as the CDC, NIH and FDA.
Image credit: Believe Limited