Finding a Balance With the Online Chronic Illness Community

After I was diagnosed with pulmonary hypertension (PH), the online community I found via social media was a huge comfort. It immediately made me feel less alone, and in the three years I have lived with PH, I have formed genuine connections with people across the world who are struggling with the same illness.

However, a difficult aspect of being part of this community often isn’t acknowledged. As supportive and comforting as it is to interact with other PHers, it also is important not to allow the PH world to become my entire world. It’s easy to become obsessively drawn into checking how other people are doing.

Also, on my PH Instagram account, I receive many questions about my condition. This is one of my favorite things about being part of the community — offering advice and a sense of hope to newly diagnosed people. But at times, the questions can be overwhelming when I’m trying to process health news myself.

It was important for me to create separate PH social media profiles so I can switch from my regular profiles when I’m in the right headspace. If I feel particularly low or anxious, I’ll avoid my PH accounts in favor of silly distractions like Netflix and comedy podcasts.

Another difficult and complex aspect of the online PH community is that sometimes it’s easy to forget that everyone’s PH is different. People often want to draw direct comparisons about treatments, expected responses, exercise regimes, and other issues, but no PH body is the same, and we’re all at different stages along our PH journey.

PH also is treated differently depending on the country. I’ve seen people become anxious if someone on their social media feed receives a different treatment or exercises more than they do.

I think these types of comparisons are unhelpful because someone’s doctors can provide better, more personalized care and advice than a random person on Facebook. 

That said, being knowledgeable about the medications recommended to other PHers can be a great springboard for asking questions to your own team and starting conversations about your own treatment. This might make your doctor’s job a bit more difficult, but maybe that’s not a bad thing.

I think the hardest part of belonging to the PH community is how invested we become in the health journeys of others, and how much pain, anxiety, and grief it can cause. Some people I’ve followed closely since diagnosis have been great sources of hope and inspiration for me. Yet it has been devastating to watch their health deteriorate. It is such a strange and peculiar type of grief that people outside the community might not understand.

I was out with a friend the other day, and I briefly opened Instagram to see an update announcing that one of my favorite PH influencers had gone into cardiac arrest and was heading in for a lung transplant. I felt dizzy and my face turned pale.

My friend asked if I was OK, but how could I explain the feeling? Someone I didn’t know, but to whom I have felt intrinsically linked since diagnosis, was going through something terrifying and horrific — something I likely will go through one day, too. That’s a lot to explain at a Starbucks!

As with everything, I think striking the right balance is key. I love my online crew of PHighters, but I also know that for the sake of my own sanity, I need to avoid obsessively using my PH social media accounts. I also need to focus on experiencing and enjoying the aspects of my life that aren’t related to chronic illness. 

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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.