YOLO (you only live once) has become my PNH motto
A phrase from my high school days has boosted me since my diagnosis
When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), I felt shock and disbelief. I was fully convinced that I’d had a false positive and that, in my heart, the diagnosis couldn’t be true. I remember doing a quick Google search and seeing a Cleveland Clinic statement that “[PNH] affects men and women between the ages of 30 and 40.”
I was only 24 at the time, so I thought, “Phew! This must not be true, and a second opinion from another doctor will clear it all up and I can move on with my life.”
After my diagnosis, I reached out to my two bosses to let them know. Since they’d been accommodating while I was in the hospital recovering from a bone marrow biopsy, I wanted to keep them in the loop. My main boss called me immediately and said he too found the statement about the normal ages for PNH and thus agreed that I was too young to have it.
As I reflect on my overall PNH experience, though, I’m happy I was diagnosed in young adulthood. If I’d been younger, I think I might not have been so mature in handling the news and taking care of my body; in the years I was experiencing symptoms before diagnosis, in fact, my bright idea was to ignore them. But I’m mainly happy about when I was diagnosed because it guided my mindset as I proceeded with a new lifestyle. Life is a blessing, and I do my best not to take my time here for granted. But at 24, I knew I had a lot of years ahead of me and that I couldn’t just roll over and give up.
In praise of YOLO
When I graduated high school in 2012, my classmates and I had a popular acronym: YOLO, or you only live once. This saying encouraged us to live life to the fullest because we wouldn’t have another opportunity. My grandma took a liking to this idea when she heard our class valedictorian quote it at my graduation. Grandma now quotes it as a response to any important life questions we ask, or even our not-so-important questions, such as whether we should get McDonald’s for dinner.
When I got my diagnosis, I really needed to embrace YOLO as my new life motto.
From childhood, I knew my basic life goals in the areas of marriage, children, homeownership, traveling, and more. I’d accomplished none of them when I heard the words “rare blood disorder.” My mental health wasn’t the strongest at the time, but it slowly got stronger when I’d chant “YOLO” in my head every day.
When I was positioned at forks in the road while making decisions, my first response was YOLO. For example, when I was asked if I’d attend a family function that I’d been looking forward to, where I’d see family members I missed, these were my thoughts:
Option 1: Stay home, feel guilty for disappointing people excited to see me and upset that I missed a fun time.
Option 2: Go and engage with as much as I can and excuse myself if I’m not feeling well.
Solution: YOLO and go with Option 2.
I’ve written here that I feel I’m slowing down as I’m getting older and more tired, which seems to be a pattern among everyone who’s aging, even if they don’t have PNH. If I’d received my diagnosis at a later age, would I have let my fatigue hold me back from embracing a YOLO mindset? Would I handle the news the same? Would I give up more easily and let this disease control more of my life?
I don’t think I would’ve bounced back as quickly if I’d been diagnosed now, at age 30 — the minimum of the age range cited by the Cleveland Clinic. I still have many years ahead of me, but I’m not sure I’d have the young spunky invincible energy that I had at 24. I would’ve found ways to make it work, but in a different way. I’m satisfied with how it played out.
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.
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