Community matters for those of us in the world of chronic illness

Recently, the mother of a young transplant recipient reached out to me about my experience with hair loss. She said it was a side effect of the transplant medications and had caught them by surprise. I was quick to pass along my hair journey, which was, and continues to be, tumultuous and often filled with grief.

Talking with this mother about my hair loss and regrowth over the past five years, I found myself overcome with gratitude that there was space for both of us to find community around this topic. In this world of chronic and devastating illness, there are so many niche concerns that get put on the back burner because they aren’t related to the more important aspects of health that typically take priority.

The interaction reminded me of an old column by my friend Kathleen that I’d read before my transplant. She had experienced unwanted hair growth, an opposite problem. Her providers told her most patients just “find a way to deal with it,” a rather unhelpful response. Knowing better answers were out there, she turned to other transplant recipients in a Facebook group and found success.

I can’t help but think of my own mother, who had quickly reached out to several other pulmonary hypertension (PH) families via a mentor list when I was diagnosed. In a time before social media and online support groups, these relationships played a vital role in her understanding of my illness. There, she could ask questions that were better answered by someone living with the disease than by a provider who cared for someone with it.

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Over the years, we learned many important things about life with PH from these families. Was it possible to travel? While a provider may say, “Yes, you can probably do it,” a medical family would provide resources X, Y, and Z to make it happen.

About a year ago, I was interacting with fellow PH News columnist Colleen Steele. In response to a question about medical supplies for PH, we both began to rave about a specific brand of tape, the only option Colleen’s son and I could tolerate when it came to care of our central lines.

These are the details that make up a community, especially for rare disease warriors. And for another warrior in need of the same solution, these small insider answers can be monumental.

The power of getting connected and maintaining relationships with people with whom you can collaborate and commiserate is so essential to survival in the world of chronic illness. And in this day and age, these networks feel more accessible than ever.

For example, I’ve begun following other people with tracheostomies on TikTok and Instagram, seeing my own life reflected in their day-to-day triumphs and struggles. Similarly, I know Facebook has become a hub for support groups. If you’re looking for it online, there’s a good chance you’ll be able to find it.

I’m so glad this mother reached out to me with her question. And I’m so thankful for every person who has been there for me throughout the years when I’ve run into my own unique concerns. These interactions remind me of the importance of websites such as this one and other similar spaces where connection and community can take place and help ease a bit of the isolation that can often surround those of us with chronic illness.

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.