How I avoided feeling guilty when my body wouldn’t cooperate
It's taken me a decade to cultivate a positive mindset and learn to forgive myself
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At the Pulmonary Hypertension Association’s (PHA) biannual conference, it is easy to feel like you should be able to do more.
There are sessions to attend, people to meet, dinners to join, and late-night moments you don’t want to miss. There is a kind of magic in being surrounded by people who understand what life with pulmonary hypertension (PH) can feel like.
This year’s conference was in Dallas earlier this month. I was able to drive and stay with a friend, which made the trip more affordable. What it did not make easier was the seven-hour drive. I arrived later than I’d hoped, but only because I waited until I felt rested enough to drive that far.
That Friday was wonderful. I attended the main sessions, went to a breakout session, met with people, and had meetings with pharmaceutical company representatives and other patients. I also rested when I needed to. Conference schedules are full, from morning to night, and unless your body can go all day for a handful of days in a row, you are going to miss things. I was asleep relatively early.
Saturday morning, I woke up tired!
I thought I would miss the morning sessions and start my day at lunch. Instead, my “PHriend” Michele brought lunch back to the room. I ate half a sandwich and went back to sleep.
When I woke up later, I fumbled around for my phone, held it close to my squinting eyes, checked the time, and thought, no, that’s not right, and reached into my purse for my glasses. I’d read it correctly the first time.
It was after 5 p.m. I wasn’t shocked, but I was certainly surprised. I had missed most of the day.
That was not a small thing. I had missed out on sessions, meetings, and heartfelt, insightful, and inspiring conversations with strangers in the hallways. I had missed chances to learn, share, and spend time with people I only get to see at events like this.
The PHA conference is a big deal to me. I look forward to it. But I didn’t push myself.
I showered, packed most of my things, and went down to dinner. People checked in to see how I was feeling, which felt super supportive. Michele and I ate dinner together. Later, there was a fashion show and dancing. I thought I might rest in my room and go back down, but I didn’t get the boost I was hoping for. My body continued to drain rather than recharge. I fell asleep quickly.
When Michele came back, she showed me pictures and videos of people laughing, walking the runway, dancing, and having a great time.
I wish I had been able to join everyone, but I never felt sad about it. I felt happy. It wan’t a forced kind of happy or a “look on the bright side” happy. I was just happy that others were enjoying their time together. At the time, I didn’t recognize how big that was.
That realization came later, after I was home, talking with family about the trip and then sitting down to write this column. That was when it hit me: The guilt never came. It had not shown up in Dallas. It had not shown up on the drive home. It had not followed me into the days after.
Missing half of something this meaningful might have spiraled me into depression for days or even weeks. I might have told myself I’d wasted the trip, missed my chance, or failed at something I couldn’t fully control.
I’ve worked hard over the years to reframe those thoughts. I’ve made myself let go of guilt. I’ve practiced being kinder to myself when my body changes my plans. This time, I didn’t have to work at letting go of the negativity. There was no internal negotiation.
I rested and did not hate myself for it
That statement may sound simple, but for me it feels enormous. It took more than a decade to get to this point. It took real work in cultivating a positive mindset, pep talks, and trying to forgive myself when my body wasn’t able to get my body to go along with the game plan.
Maybe the most important thing I brought home from Dallas wasn’t information, resources, or new connections. Maybe it was the realization that I don’t have to earn my own compassion.
After all these years, that may be one of the most important lessons PH has ever taught me.
For more, follow me on Instagram or check out BreathtakingAwareness.com.
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.
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