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When I Understood the Importance of a Rare Disease Support Group

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I had never been to a support group before. When my mom was sick, she opted to create her own support system and forego joining a support group. She chose to spend her time with her family and friends as much as possible. We had attended a large, organized event for pulmonary hypertension (PH) patients, which she found a bit overwhelming, and she decided it just wasn’t her thing.

Years later, my friend Steve asked me about going to the local support group. He was surprised to learn I had never been to one. I told him my mom decided to forego that. My mom passed on by the time we were having this conversation, and I wondered what it was like and what happened there. Somehow my impression of a local support group had some resemblance to a therapy session, like on “Frasier,” “The Sopranos” or reaching way back, “The Bob Newhart Show” of the 1970s.

As a daughter of a patient that passed on and not having PH myself, I felt like I shouldn’t go.

Steve said, “I really want you to meet these people.”

“OK, I’ll go if you go.”

The group met at a restaurant that looked out on the ocean. The agenda went something like lunch, guest speaker/medical topic presentation, announcements, formal close and then everyone hung out and socialized. The group leader was Tiffany, the quintessential California girl in her jeans and a sweater and her O2, with her hair and nails done. I also met Ornah, an attorney with a megawatt smile and a spring in her step, and Phaedra, Ornah’s BFF, quiet and dignified but also steadfast and no-nonsense.

Ornah seated me at a table next to Bruno and Bill, young men who looked like GQ models, and across from her in-laws who were visiting from out of town. As I looked around the room of about one hundred guests, there were people of all ages and ethnicities. At a glance, it was hard to tell who was a patient and who was a caregiver. Some might have had their O2 with them, and some might have brought a rollator or more. Some brought their kids because families were welcome. Aside from the medical presentation, there was not much about this gathering that was blaring “rare disease” at you. It was a group of pleasant people enjoying each other’s company.

As the afternoon progressed, I said to Steve, “all the cool kids are here.”

A PSA we had worked on just launched on television, and many of the people in attendance had seen it. Steve introduced me as the person who had gotten the PSA on television during announcements. True enough, I had called PSA directors all over the country and pitched the PSA to them. I smiled and waved a little as the room erupted with applause and cheers. Not for me specifically, but because patients and their families want to see more about awareness for PH, especially in the media, they were excited to see it happening on television.

I told Tiffany and some of the others that I felt kind of weird being there, not being a patient myself. “No, we really want you here,” they said. Someone took me by the hand, sat me down, and told me their story of having both PH and scleroderma. Others wanted to know my connection to PH. Most of all, they wanted me to feel comfortable coming back to future group meetings and to connect on social media.

Driving home, I thought about how this was not really what I expected. No Tony Soprano. No Dr. Frasier Crane. No Bob Newhart. No going around the circle talking about your feelings. And that’s OK. Instead, I had lunch with a hundred new friends.

Many cities don’t have enough people to have a local support group. That’s why online support groups are so important. Patients all over the world are welcome in any number of PH support groups online, and family members are welcome too. It’s a place for moral support, learning, sharing, celebrating and sometimes a place where we grieve. It’s the friends you didn’t know you needed. It’s where you don’t have to explain anything anymore about what you go through because they get it. Some people have found love and romance in a support group, meeting their significant other, and some have even gotten married.

As we celebrate World PH Day, let’s make sure we recognize the vital contributions of support groups that show us what being cool is all about.

Getty image by Softulka

Originally published: April 29, 2021
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