The magic words that help boost my social life: ‘Not today, PNH’

A mindset change and a review of my options have let me make plans again

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by Erin Fortin |

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My social life has suffered as I’ve lived with my rare disease, paroxysmal nocturnal hemoglobinuria (PNH). Many times my symptoms have held me back, keeping me from making plans because my health is so unpredictable. It’s frustrating. I hate coming across as a flaky friend who backs out of plans at the last minute, but sometimes I have to do it because I don’t feel well.

But once I started telling myself, “Not today, PNH,” my view of making plans changed, as has my social life.

Overall, getting excited about social outings isn’t as simple for me as it is for others. My mind immediately asks questions: How will I feel that day? How long will the activities last? Do they involve a lot of standing or physical exertion, as in bowling? Will there be food and water available? And lastly, do I have an escape plan if I start to feel bad?

All these concerns can make my social life exhausting. I end up uninterested in getting out, choosing instead to stay home. But that’s at the cost of maintaining my friendships. And I enjoy spending time with my family and friends, so I find it unfulfilling to let go of the chance to make memories with them.

When COVID-19 restrictions started to lighten up, I began to realize how much I was missing by letting my PNH symptoms control my social life. Two main factors helped change my mindset so I could again say yes to plans.

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Valuing my time with loved ones

Spending time laughing, smiling, and bonding with my family and friends brings me more joy than probably anything else. It gives me serotonin and dopamine boosts that bring up my mood. For these reasons, I didn’t want to miss any more time with these amazing people than I already had.

Nowadays, if I have PNH symptoms on a day when something’s planned, I tell myself, “Not today, PNH,” and move forward.

To control all that I can, I take care of my body and make sure I’m in a safe space if I need a break from social interactions; for example, I have my car with me in case I want to leave on my own terms. I also communicate with the people I’m meeting, so they’re aware if I seem unlike myself. And lastly, I push PNH out of my mind and try to just have fun.

How going out helps me physically

On top of a better social life, getting out, moving my body, and distracting my mind also help improve my PNH symptoms.

I recently had a terrible headache on a day when I was supposed to be with a family member I don’t often get to see. I was really looking forward to the visit, so I woke up upset that my head was causing me a great deal of pain. But once I started getting ready and moving, I felt the pain ease.

I also try to embrace the saying “look good, feel good,” and I do find that getting myself dressed and ready to go helps me feel better overall, as well.

It’s funny: My daughter’s favorite YouTuber, Ms. Rachel, sings nursery songs that I can relate to, including “Rain, rain, go away, come again another day.” I’d like to tell my PNH symptoms to go away and come back another day, but I know that’s not realistic. So instead, I tell my brain to let PNH’s control over me just go away so I can get with the flow. If I really don’t feel well, I can leave my plans early.

This mindset change has made saying yes to plans a whole lot easier.

Note: PNH 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 PNH News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.