The importance of PHriendships

When you deal with the onset of a chronic illness you are
forced to confront your relationship with yourself: your expectations of your future and work/life balance. For me pulmonary hypertension revealed greater meaning in my connections with others too. I realized just how lucky I was to have great friends who stuck by me through my new set of circumstances. I also truly valued those new relationships I formed, many of which were born out of a common experience of ill health, or indeed pulmonary hypertension itself.

Like many patients, I initially struggled to comprehend my diagnosis. Friends knew I was very ill but also couldn’t quite grasp the seriousness of what it entailed. Part of this was due to the fact that we were all in our twenties. We were not equipped to deal with serious ill health at that point as, for the main part, we had not been exposed to it.

But my friends and I gained understanding as time went on. For me, a good friend was someone who understood when I was tired and who knew that I might need to change my plans at the last minute. There was Anna, who knew that though I could dance in my seat at a Madonna concert, but couldn’t walk the steep hill from the concert venue! There was Tom who flew to San Diego to be there for my PTE surgery and who gave me a place to crash whenever life at home became too much.

I also developed relationships with other people with PH. One of those was a mother (also called Sylvia) from Northern Ireland who I’ve never met in person but versed me on everything I could possibly need to know for life before and after PTE surgery. We still check in on each other using that shorthand only used by those people who have been through such similar life-altering events. At PHA’s last conference I was telling my story to others at a support group meeting when another patient jumped up and exclaimed, “Oh my God, you are Sylvia, the Irish girl!”
That was Amanda and it turned out she had her operation a week after mine and had heard encouraging tales of how well I had responded to surgery. From that point on we became firm friends and I even visited her in her hometown of St Louis this year. (see photo)

And there are so many others I’ve met online and in person, people who I would never have known were it not for our connection to PH. They are always ready to share encouraging words or offer advice.

My old friends remind me of who I was before my illness while my new friends give me inspiration for who I can be after serious ill-health. Both are equally important and I couldn’t imagine the last few years without them.

How have your friendships developed and changed since your diagnosis?