Storytelling is an important part of rare disease. ‘Share Your Story’. But what does that really mean? Overthinking is often a barrier to the process. What if we share too much, or too little? Perhaps we worry that people will get the wrong impression or pity us. Some may be afraid of ‘outing’ themselves and suffering from repercussions with an employer, a friend, or a family member. These are all valid concerns. The most excellent part is that you have control over your story and how much (or how little) you choose to share.

Why ME? Why Do I Need To Share MY Story?

It doesn’t seem fair, does it? With so many people who have a less than ideal circumstance, why then are we heaping this on top of the pile? Don’t we have enough to manage as it is? Although these are all fair questions, we need to address the zebra in the room. Rare Disease Storytelling is vital for each distinct patient cohort, and to the overall health of the community. Our stories deserve to be told because they matter.

Ask yourself this: how often do you search for personal stories from someone who has been diagnosed with Hypertrophic Olivary Degeneration? When you read or listen to those stories, how do you feel? We are learning the importance of representation in the media. How often have we seen people share inside of a social media group that they saw an episode of a show that features a person with their shared disease?

My mind calls back to the series on Netflix, Away. The show featured a man who was unable to go on a space mission because he had a rare brain disease called Cerebral Cavernous Malformation. I watched intently. I immediately jumped into the Alliance to Cure CCM‘s Facebook Support Group to see if others knew about this show, and what they were saying about it. We all felt seen, and it was a big moment.

We all felt seen, and it was a big moment.

What’s The Zebra In The Room?

Anecdotal evidence suggests that rare disease stories are the key factor in a researcher or industry partner choosing to adopt a disease into their repertoire. This is how we can start to demystify HOD and start solving the problem. If you don’t want to have a doctor Google HOD in front of you, it is incumbent upon you to spread awareness. The fool proof way of spreading awareness is sharing first hand accounts of the disease. Researchers and scientists see the disease in a lab. They aren’t in clinic with patients and visualizing how this disease affects a life. Only you can demonstrate that for them through sharing the details of your journey.

Please do not mistake me. I understand all of the reservations regarding sharing your story. It takes more vulnerability than most of us are willing to give. Putting your deepest and scariest moments out into the ether is enough to make anyone’s heart flutter! It seems cruel and unusual that we are required to do this. Rehashing the worst days of your life for other people to comb through and pick apart does not sound like my idea of a good time. However, here I am, doing it over and over again. Am I a glutton for punishment? Perhaps. However, I do this for the advancement of our community. I am always hopeful that someone else will feel inspired to do the same.

There Is No Time Like The Present!

In my experience, starting is the worst part. Many times, we just don’t know where to begin. For me, I decide what aspect I want to talk about. I give myself a few days to think on that topic, and my plan starts to come in to focus. Remember all of those language classes, where we had to learn how to outline a paper? You finally get to use that knowledge in real life! It helps to organize your thoughts into an outline, or at least identify a few major points.

When I share my diagnostic journey, I usually start with what preceded my diagnosis. For me, that is my experience with cavernous malformation, brain surgery, rehab, failing rehab, and my eventual diagnosis. From there, I decide what direction I want to take the piece. Do I want to go into the emotional aspects of the journey, or keep it to the symptom management? Perhaps I am feeling that the audience is ready to hear how I am managing life with the disease, now that I am three years in. It really is up to you where you head with it. You have complete control of the journey.

Craft Your Elevator Pitch

It is difficult to keep your story short because our disease is so complicated. Although details are important to us, we need to remember our audience. In my career, I distinctly remember a manager who would visibly check out of our conversation if it lasted more than one minute. There is nothing more deflating than seeing someone’s eyes glaze over when you are sharing something personal with them. So how do we keep our story short yet factual?

The elevator pitch is a one minute story that retains the attention of the audience, yet gets your point across. What is the most important fact that you want your audience to know? What are the supporting details that matter? Does your listener need to know that you fall every Wednesday at 2 pm? Probably not. Do they need to know that there are no treatments or cures available for your rare neurological disease? That is a resounding YES! Elevator pitches should tell the listener who you are and what you are after. Are you looking to gain support? Maybe you are trying to fundraise for the cause. Perhaps you are strictly trying to spread awareness. Whatever you are trying to accomplish, try to keep it between 30 – 90 seconds.

Share Your Story In Different Mediums

Oftentimes, sharing your story comes in the form of a written essay or blog. Did you know that it doesn’t need to be that way? You can record a video to share. Maybe a voice recording is more of your style. HOD’s most notable comorbidity, ataxia is known to take your voice. Some folks aren’t comfortable speaking publicly, though we would argue that your ataxic voice is very powerful. We highly encourage you to not be ashamed of it. It will make your listener pay closer attention to your message and they will naturally want to engage. You could write up a script for a short film. How about sharing through art? All of these mediums are powerful and vulnerable. One thing is certain…however you choose to share your story, it will be powerful!

Time to share your voice!

What is stopping you from sharing your rare disease story? Tell us in the comments below!

Ready to share your story with us? Send us an email at contactus@hodassoc.org, and let’s get started!