Finding Your Tribe with Chronic Illness

I recently had the opportunity to attend Stanford Medicine X (MedX) in California for the second year in a row. I was an ePatient delegate/scholar, so I received a scholarship to go to the conference. Last year my focus was sharing about the conference on social media, and this year, I was given the opportunity to share my story on the main stage.

MedX is “an academic conference designed for everyone.” The focus is on bringing new ideas to the fore, especially with regard to emerging technologies and medicine. The conference brings together doctors, pharmaceutical companies, technology firms, others, and most importantly, people who live with chronic illness.

MedX’s claim to fame is being one of the only conferences that is truly focused on the people who live with illness. I have been to other conferences, including several with “patient” in the name, and representation from the chronic illness community is minimal, at best. At MedX, we are celebrated. Our experience is seen as making us experts, and puts us on the same level as everyone else.

Aside from the amazing content of the conference, the real draw for me is to meet others from the chronic illness community. Many of the people I have met at MedX are individuals that I have followed on social media for a long time.

If you find yourself with the opportunity to meet some of the people in-person who you have spoken to online, I would highly recommend that you do take advantage of it. Although the online connections are amazing, and sometimes the only kind of connections with others in the community that we have, there is definitely something to be said for good, old-fashioned, in-person meetings. I know, crazy right?

I’m sometimes a little scared about how those online relationships will translate in real life, but in my experience, they work out amazingly well. And this is why I think they are so important. You can attend a conference like MedX, which is totally overwhelming and exhausting, but also awesome, and you get through it all because of the relationships that you have nourished online and grow in person.

One thing I will emphasize is that you don’t have to only meet people with your same disease. In my experience, people with other chronic illnesses experience much the same difficulties as I do with my illnesses. So you don’t have to attend a conference that is explicitly for RA patients. The chronic illness experience is one that crosses boundaries, and I think that in-person communication helps with this. Sometimes our online communities are sort of walled off based on our own diseases, but when you start talking to people in person, you realize that the experiences are the same, although the diseases are different.

Whenever I go to events like this, no matter how I felt at the start, I always leave feeling better, if only emotionally. The sad truth, though, is that we all have to go back to our regular lives, which often take place across the country, or even across the world from each other. And having to say goodbye to friends – people who really get you – is a hard pill to swallow, because in real life, we don’t necessarily find support from the people around us.

The only negative about MedX is that if you don’t get a scholarship, it is pretty expensive to attend. But it’s totally worth it because it energizes you so much. I was so inspired, both this year and last year, with the fact that the content of the conference is consistently amazing. That’s pretty hard to find. It really is a one-of-a-kind experience, and I urge you to be on the lookout for similar opportunities. You can’t put a price on spending time with “your people."

Leslie Rott
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Leslie Rott

Leslie wrote for HealthCentral as a patient expert for Rheumatoid Arthritis (RA).