Setting the Scene
The common sentiment is that most twenty-somethings spend their time applying for jobs, swiping on dating apps, or glued to their phones. Meanwhile, my fellow Gen Z advocates and I are getting active with our legislatures on Capitol Hill, educating our medical professionals on our conditions, and arguing with insurance companies like it’s a full-time job—because it kind of is.
Hi, I’m Zach, I’m twenty-three, and I have Type II Hereditary Angioedema (HAE). The not-so-wonderful truth about HAE is that many of our older community members lacked the resources or medical capabilities to obtain an accurate diagnosis at a young age, which meant that my generation and I were the first to advocate for HAE at such a young age. I was diagnosed at one and a half, meaning I haven’t known life without this debilitating chronic illness. This gives me a unique perspective that I can bring to the conversation, and on top of that, we have a whole new arsenal of tools to raise our voices on the issues we are facing.
Advocating as a Digital SavantWhile every voice is powerful, every action matters, and we should never let up in manifesting a better reality for rare disease patients. However, there’s a specific kind of megaphone that Gen Z is the master of that allows us to make our voices the loudest in the crowd, being raised in the social media era. Wielding social media like a weapon for activism and awareness allows us to cut through the noise and get our points across. You can see this implemented effectively in places like the HAEA and Young Adult Rare Representatives (YARR) Instagram pages, where both the HAEA and YARR empower young voices to foster community, spread awareness, and empower other youth to tell their story.
You can find the HAEA Youth Instagram here and the YARR Instagram here.At a time in our lives when the word “rare” is synonymous with “invisible,” We don’t wait for institutions to listen—we make noise. This includes sharing our experiences on podcasts, being vulnerable on social media, and using our lived experience to encourage others to stand up and advocate with us for a better system than the one we have. We do a lot more than just advocacy, though. We use the digital landscape as a hub for support.
The Challenges We Face
To put things into perspective, I am incredibly career-driven. However, I’ve lost countless hours of productivity to attacks, emergency room visits, clinical trials, doctors' appointments, and way too many calls with my insurance company getting them to refill my medication and not to safe step me. This has been incredibly detrimental to my career and personal life. As a driven Gen Z advocate, I aim to make a positive impact on our country and communities, but I often find myself gatekept by hospital rooms and medication refills. On top of all of this, while yes, my age equips me with a unique perspective and a skillset suited for the digital era, the fact that I am as medically aware for my age as I am has been a problem for healthcare professionals on more than one occasion. I cannot count the number of times an emergency room doctor has wanted copious amounts of bloodwork done, and my insight that it's a chronic condition I’ve had since birth, therefore, I do not need bloodwork, has been met with rolling eyes, attitude, or a matter-of-fact demeanor. This is barely scratching the surface of the issues we face as young rare disease patients. I’ve heard stories of friends in the HAEA Youth community being victims of medical gaslighting, triage looping, fragmented care, and worse.
In a world where we are looked down on and disregarded, we must also strive to become the best versions of ourselves, all while navigating the seemingly insurmountable roadblocks and issues that come our way.
What Gets Me Out of Bed
We live with a system made with eyes that glance over us like cracks in a window, and some days we are left to ask. What can we do? Does it get better? Can we make it better? The answer, thankfully, is yes. That is the truth about all of this. What keeps me motivated and tenacious is the excellent support system I’ve built around myself. Whether it's my mom being a pillar of hope and encouragement, my care team of physicians and specialists applauding my hard work to fight for a better reality for myself, or even my friends in the HAEA who remind me I’m not alone in this journey. Find your system, and your flame will never die, no matter who or what tries to blow it out.
Advice to Fellow Gen Z Rare Disease Advocates
If I could tell you to wake up tomorrow and do one thing, it’s to use your voice. No matter how small your follower count is, no matter how unimportant you think your story is, every single voice and story matters. There are over fifty million Americans with rare diseases, and you are one of the special and rare people who belong to that group.
You deserve to be listened to and have your sacrifice and suffering recognized. A warning I will give is that the recognition you may receive can lead to isolating yourself. Remember, there are very few of us. What we don’t have in numbers, we make up for in collaboration. This space needs as many voices as possible because the louder we are, the more powerful we become as a collective. My final note is that in your pursuit to advocate and achieve a better tomorrow, remember you are human. You have limits. Every person needs recovery time, especially us. Know when to take yours and protect your peace. You ultimately know yourself better than anyone, so trusting in yourself is the ultimate recipe for success.
Are you interested in sharing your story? The HAEA Community Blog wants to hear from you! Get started here.
