Going to an Ehlers-Danlos Syndrome Conference can feel like an out-of-body experience. By that I mean it may be the closest thing to heaven for those of us who are often labeled as “not-normal” or who feel like the black sheep of a group because of a disability or medical condition. You see, when you attend an EDS — or any disease-specific — conference, almost every person there is just like you. For once in your life, you’re the norm, and are surrounded by hundreds of people who know exactly how you feel.
(Editor’s note: when you have to fly to attend that conference, prep for air travel with these helpful hints.)
When comparing stories with new friends, there are a lot of “OMG, I thought I was the only one!” and “That happens to me, too!” moments. You can walk around in a neck brace and no one gives a second glance. Many people’s hands are embellished with Silver-ring splits, a necessity for those of us with hypermobile fingers. During breaks, some people take a seat or even lie on the ground – and that is all totally normal.
First, let’s talk about the food because, let’s face it… that’s one of my favorite parts. During meals, everything is labeled with allergens and there are even gluten-free cookies and lava cake for dessert. (Can I get a slow clap?) Even during breaks, they have healthy, allergen sensitive options like Lara Bars and fruit. Plus, when they put out coffee and tea, there are Soy and Almond milk options, in addition to regular creamer.
Each session lasts about an hour or so. For some, including me, it can be difficult to sit up in a chair for that long. If you need to get up and leave, feel free to do so in a quiet manner. There are recovery and relaxation rooms where you can lie down and take a break from the noise, lights, and excitement. If you are worried about missing material from the session, ask a friend for a recap or look for the presentations that are often re-posted online after the conference. The information you learn can be quite overwhelming to receive all at once. My advice is to take notes. You may find yourself paging through them for weeks, months, even years to come – and that’s the point. Being able to hear information straight from the leading experts in their field is one of the most valuable opportunities I have ever experienced in the medical world. If you are lucky, you may be able to catch a moment one-on-one or in a small group with one of the speakers as they mill around the conference – but remember, they are there to learn, too, so try not to bombard them. A great idea is to make an appointment with them after the conference and mention that you saw them presenting!
The people you meet at these conferences may just become your best friends. I attended my first conference in 2008, in the “Kids and Teens Program” and I met over a dozen kids just like me. Nearly 10 years later, we still keep in touch and one of those fellow zebras is my best friend, despite being (literally) across the world from each other. Each time I attend one of these medical conferences, I come away with contacts, resources, information, and –most importantly — real, true friends who understand what life is like with Ehlers-Danlos.
It can all be overwhelming to live in the moment. Enjoy yourself however, and this is important, do not over do it! If there were ever a group of people who understood you needed a moment to sit down or an hour to rest, WE are your people!
In a world where we often feel abnormal and never seem to fit in, it is pure bliss to become lost in a sea of zebra stripes at these conferences and feel like one of the normals.
Have your own tips for getting the most out of a conference? Please share them, and read others, on our community wall.
2017 EDS Global Learning Conference
What to Expect at the EDS Global Learning Conference
Day 1 Conference Wrap
Day 2 Conference Wrap
Day 3 Conference Wrap