I love myself even though PNH works against me

How my disease struck down any positive feelings — but now I've changed

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by Erin Fortin |

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One of my favorite podcasts, “Positivity Unleashed,” had an episode about self-love that surprised me. I immediately drew a connection to my rare blood disorder, paroxysmal nocturnal hemoglobinuria (PNH), and how it affects my mindset each day.

After listening to the episode, I decided to dive in and think of all the ways my PNH diagnosis has affected my self-love. In a previous column, I mentioned how proud I was to let PNH define me because it has prompted some positive traits. But since then, I realized that it’s separate from how my health struggles continue to take a toll on my self-love.

In the podcast, the hosts discuss the balance between being too selfless and taking care of yourself. I struggle with this situation because I tend to be selfless when caring for others. If I make dinner, I’m the last one to sit and eat. If my daughter needs something, I jump to get it even though it can wait. In the process of taking care of others and putting them first, I’ve ignored my own needs, which triggers and aggravates my PNH symptoms.

I’m also struggling to keep up with society’s expectations of an adult in my age range. Sadly, I compare myself with others and their accomplishments, wondering if I’m behind in this utopian timeline of life. By the time I take a step back and realize that what I’m doing is negative and unhealthy, it’s already affected my self-love.

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Impediments to self-love

When I make these comparisons, the common denominator of what’s holding me back is PNH. My fatigue, I believe, is the real culprit that prevents me from getting stuff done. Because my mind is moving at a fast-paced speed while my body isn’t, I feel like the top half of my body is leaning forward and waiting for my legs to take steps.

I question if I should be doing more, but the reality is that I don’t think I can handle more, at least not without exacerbating my PNH. That “more” includes increasing my work hours and responsibilities to make more money; starting new projects, such as a hobby or a home renovation project; and making more friends, even though I have trouble finding the time to maintain the friendships I already have.

When I attempt to add more to my plate and start something new, I get easily overwhelmed at the thought of being unable to finish because I’m depleted of energy. This fear of the commitment to start things got worse when I became a parent; I had to save my energy to take care of my daughter, and it’s difficult to navigate that.

All of these “mores” in life that I’m not achieving leave me frustrated, which affects my self-love. I question if I’m unmotivated, too lazy, or just not enough. While thinking about how PNH has affected my self-love, I was surprised to realize how much I’m negative about myself every day because of my disease. I thought I felt a lot of self-love, but the above helps me see the areas I need to work on to keep PNH separate from my self-worth.

I’m excited to change my mindset in these areas and to be realistic in my expectations for living with PNH. Moving forward, my goal now is that when I find myself thinking “I could do better” or “I should do more,” I’ll stop and remember I’m doing a fantastic job that meets my abilities. If I’m pushing myself in a healthy, balanced way, that should be enough. Because of my symptoms, some days I can push more, and other days I can’t push at all. And that’s OK.

I love myself even though I have PNH, and that’s a beautifully empowering feeling.

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.