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Social Media: Connecting with Facebook Groups

Living with a rare, chronic illness like PH can leave you feeling alone. Interacting with fellow patients and caregivers can help combat isolation and provide feelings of acknowledgment and support. When you have a rare disease, those who understand your situation the best may not be available in person. That’s why the PH community often turns to online social networks to find meaningful and helpful relationships with others who are living with pulmonary hypertension.

Where to Connect

PHA offers the community a number of specific Facebook groups:

suPer Heroes: Long-Term Living with Pulmonary Hypertension

Generation Hope: Young Adults with Pulmonary Hypertension

PH Plus: Pulmonary Hypertension and Associated Conditions

PHA CTEPH: Chronic Thromboembolic Pulmonary Hypertension

PHA Teens

Why Connect on Social Media

“Personal connection is so important, and if you live in an isolated area or just feel isolated despite being surrounded by people, then social sites can be a much-needed haven,” shares Stacey Gausling, who is living with PH and lupus.

PH patient Alex Flipse agrees, saying, “We share our thoughts and fears about living with PH that most people who don’t have PH don’t understand.”

Kathy Groebner, parent to a child with PH, finds support online from other parents caring for children with PH. “It’s the support; I find that it helps to hear how other parents and doctors have handled [issues] when I am looking for answers,” she says. “Also, by having a way to connect, I have the ability to know who is visiting my area and when. My daughter has made real friends with people who have PH, and she knows she is not alone in this journey.”

For Lynda Cooper, her complex journey with chronic thromboembolic pulmonary hypertension (CTEPH) was more manageable with social media. “I joined PHA CTEPH (a PHA Facebook group), and a new world opened up. I heard stories from others living with PH, their struggles, their wishes and dreams, their negative and positive interactions with professionals, their battle with side effects, their frustration at no cure, their courage and hope.”

Lynda recently underwent pulmonary thromboendarterectomy (also referred to as PTE), a surgical procedure to remove chronic blood clots from the arteries in her lungs. “I posted online throughout my journey with the PTE surgery that I had in Toronto this past November. All the comments on my postings were positive, encouraging and helpful. I actually purchased a tablet to take to Toronto to specifically keep in contact with friends and family on Facebook during this hospital stay.”

Additionally, there are several community-created Facebook groups that can be found by searching “PH” or “Pulmonary Hypertension” within Facebook’s search function.

“I find a lot of support online. If I’m having a bad day and I post about it, I get lots of prayers and support. As a sick person, I do not get out much to meet others, so my Facebook friends help me feel less alone,” shares PH patient Kathy Van Osdale-Levitt.

Alayna Benoit agrees, “There was one day I was in so much pain, and I went online and expressed my frustration. A few girls commented and told me four beautiful words, ‘You are not alone.’”

Tips for Social Media

To make the most of connecting through social media, Stacey Gausling shares, “Have a good working understanding of PH. It can be dangerous to generalize other people’s treatments as your own. Also, try not to use it as your sole source of personal support. If you are facing issues in coping that are beyond the scope of a social site, please seek professional advice. Finally, be aware how your words can affect yourself and others.”

 

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