I recently co-authored an article about what to do the day after receiving a diagnosis. Steps to take, tips to follow and how to find support. I have since been thinking about it and what I did with my life after my son was diagnosed with an ultra-rare disease. As caregivers and patients, some of us go full force in to the world of advocacy, a world most of us never imagined.
Not very many of us get into rare disease advocacy by career choice. It’s not something we sat down with our high school guidance counselor and mapped out which classes to take. It’s not on the list of majors at the university I attended and I’ve yet to meet someone who dreamed about this as a career choice as a child (raise your hand if you wanted to be a fighter pilot like me- thank you Top Gun). Many professionals within the industry have been trained on this matter, have taken classes and focused their career on it. To them I say thank you for choosing a noble profession that brings light into the lives of so many families across the world. But lets talk about the majority of rare disease advocates today. The ones I meet at random hotels across the country, our luggage tattered from traveling across the country in the name of rare disease.
At some point we were known by another title. Some of us were stay at home moms, attorneys, physicians, teachers, cosmetologists, mortgage lenders and more. Many of us were in the middle of our college careers trying to decide what we wanted to do with our lives when a disease altered that course. We didn’t come into this role as a professional. In the middle of trying to remember how to spell a drug with the name like Eculizumab, we suddenly are researching about clinical trials and emailing everyone at the bottom of a journal article at 3am. Do we know what we are doing? Sometimes. Never. Once in a while. We are grabbing at straws and trying to make sense of them. And then something incredible starts happening- we begin to understand. On a whole new level that we never thought possible, medical terms and diagnostic processes begin to make sense. In the middle of the night, on napkins during making lunch for kids, and epiphanies while taking a never hot enough shower, we begin to make plans. Ideas begin to flow and some days its a rush to get them all out on paper. Questions to ask a medical team, thoughts to post on social media, ideas to reach out to other patients and in the middle of all these thoughts, advocates feel hope. We think “this could be it” and we move forward. Advocates can’t be stopped- we have missions to fulfill.
Have Patience With Us
The majority of our colleagues have had years of school learning medical terms, how to run trials and more. We are frantically learning new vocabulary, understanding how industry works and trying to figure out who key players are and where to go for help. All of this while juggling doctor appointments, family schedules, relationships and a never-ending to do list. In college I used to stay up late studying for a test, pass it the next morning and barely remember what it was about after lunch. We are not learning this information to pass a quiz or finish an essay. We are learning all of this because lives depend on it. Please be patient- we are getting our education on the fly but I promise that what we are taking in is going to last a lifetime and make a difference. Your patience is support. Your support in helping us understand is hope. And hope may be all we have sometimes but it’s going to make a big difference for someone else. Be patient- we are changing the world.
Sleep. I’m sorry, explain what that is to me because I vaguely remember what a full nights sleep used to be. As an advocate, especially if you are a patient or a caregiver, your role doesn’t work 8-5pm. It’s 24 hours, 7 days a week, no time off and plan on spending your holidays thinking about it. This role isn’t something that we clock in and out of each day- it stays with us. It can be exhausting but if it wasn’t so rewarding we would clock out and call it quits. We adapt and learn how to nap and figure out the best ways to stay awake. We cover dark circles under our eyes with makeup, fill up on caffeine, snore on airplanes and nod off during lectures. We do the best we can knowing that we want to do more- sighing as we realize just how much more has to be done. If we have a glazed look in our eyes, please take us to a corner and give us a blanket. Not possible I know. Instead, ask us questions about our patients and our community because nothing gets us more excited and feeling alive than advocating for the people we love the most.
We Need Each Other
I love when a group of advocates gather together at the end of a conference night. When we talk about our disease, our communities, our patients and our progress. We share ideas, pass names of experts around and cheer each other on. We give advice and warnings. We laugh (a lot) and cry (a lot more). We hug, we pass Kleenex around and we wipe away tears and buy a round of drinks. No one understands the life of an advocate better than another one. Don’t criticize or judge- we have more than enough of that from everyone else. Support each other and love each other. Take care of yourself and love yourself so you can pass it along! I have my own PTSD and downfalls, I make mistakes and I say the wrong thing sometimes (shh.. I’ll never admit that to my kids). We are emotional and on edge. We need to build each other up and bring out the best in each other. We all have keys to rare disease that will help the next person- share your knowledge, your resources but most importantly, share your smile.
Advocacy is Amazing
I never wanted my sons disease to define him and somehow it has defined me. I took the fight or flight theory and chose to fight hard. I can’t imagine what life would be without all the incredible advocates, clinicians and industry leaders I have connected with. Each one has taught me something new, expanded my dreams of treatments and cures and ultimately challenged me to do more and become more. It’s not a career choice showcased on a college tour, it’s not a weekend hobby and it’s not something that you can brush off easily. Advocacy, in all its forms, is the most incredible act of service and love that I have come across. It is people from all around the world with one goal in mind- fulfilling the hope that all rare disease families desperately hold on to. Advocacy is amazing.