Chasing the American dream is complicated with PNH

My life with a rare disease looks different from what I'd imagined

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by Erin Fortin |

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Ever since I was little, I was programmed to believe that chasing the American dream was my main goal in life. To pursue that goal, I believed I had to do well in school, attend college, get married, land a good job, have children, and live happily ever after. This one-size-fits-all approach to life was my destiny, I thought, and when I was younger, I was convinced that nothing would stop me.

Singer Salem Ilese has a song called “Mad at Disney” that talks about love, but the lyrics remind me of my health situation: “I’m mad at Disney, Disney/ They tricked me, tricked me/ Had me wishing on a shooting star/ But now I’m 20-something/ I still know nothing/ ‘Bout who I am or what I’m not.”

I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) at age 24. Wit its popular movies, Disney never explained how I should continue chasing the happily-ever-after while living with a rare disease. So now what?

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Avoiding the comparison trap

I’m very blessed and grateful that I’ve achieved parts of this dream. I graduated from college, got married, and started a family. But as I’m chasing the rest of these goals, I find myself making adjustments to accommodate my PNH-related needs, which is frustrating.

The biggest struggle I currently face is working while buying a house. In a previous column, I mentioned the challenges of working full time as a PNH patient. I feel like I’m not achieving the full potential of my college degree because of my PNH symptoms, which means less earnings to put toward that house with a white picket fence.

It’s like the American dream is a train, and I’m driving a car parallel to it, trying to match its speed. But the train is faster, chugging along while I’m being stopped by every red light. I watch the train come and go, and now I have to decide whether to keep chasing it in hopes of eventually catching up or to turn down a different street.

This feeling is especially burdensome in today’s world of social media. A variety of hugely popular influencers post content about chasing that dream, and they have hundreds of thousands of followers because people are intrigued and want to follow in their footsteps.

I’ll see content, for example, of mothers making their children organic, healthy food from scratch. Although I love watching these videos to get new ideas, I’ll compare them with how I feed my own daughter. On the days I’m not feeling well, she doesn’t always eat the healthiest.

I’ve started creating boundaries for myself to avoid these self-deprecating comparisons, but I do question if any of these influencers would still do what they do if they were living with a rare disease.

I have days when I feel motivated to not let PNH stop me, but maintaining that motivation is a problem. Symptom-filled days slow me down and are such a buzzkill when I have a list of things I want to get done. I manage as best I can, but I keep returning to the thought of that train moving faster than I am. I wonder if it would be easier just to take a different path rather than trying to keep up when I physically can’t.

As I decide what kind of wife, mother, employee, and human I want to be, I don’t think I’ll keep following the train like I always believed I would. I want to follow a new path that leaves me feeling accomplished rather than defeated. I want to celebrate the small victories, even if they are a fraction of the accomplishments that influencers post about.

My new society is the loving and accepting rare disease community that has welcomed me with open arms. We lift one another up by encouraging each person to follow their own timeline. We understand that life journey questions — such as, “When are you having more children?” — are much more complicated for us and should be asked delicately or not at all. And while none of us asked for our health battles, we recognize that this community is a silver lining that helps keep hope alive.

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.