With my fiance’s health crisis, I feel a new degree of empathy
How my medical struggles are helping me better appreciate his challenges
It’s the sensation you get when you’re walking up a flight of stairs and feel like you’re breathing through a straw. It’s the terrifying moment when your scope of vision begins to shrink just before you black out. It’s your legs burning and feeling like Jell-O when you’ve been standing too long. It’s the stark reality that your life has changed forever, and you have little to no control over it.
That’s what I’m watching my fiance go through now. I can’t help but see the parallels between his past few weeks and when I was diagnosed with my rare, life-changing disease, atypical hemolytic uremic syndrome (aHUS). My body suddenly became foreign to me. Now he’s dealing with the same thing.
I nearly died in September 2020 when aHUS caused multiorgan failure and hemolytic anemia. I endured kidney and liver failure, hypertrophic cardiomyopathy, and permanent damage to my uterus. And that catastrophic attack on my body would be happening today if I wasn’t doing chemotherapy for the rest of my life. But it’s caused a slew of other permanent issues and limitations.
I went from being an active, single mom who was working as a school’s assistant director and remodeling a new home by myself, to being barely able to walk or stay awake. “Devastated” isn’t a strong enough term for what I felt and still feel today. I have to ration my energy carefully each day, thinking ahead to all I want to accomplish. I have a small and finite amount of energy, and if I go beyond that reserve, my body just shuts down until I rest.
Of spoons and bronchospasms
In the rare and chronic disease world, we often explain that rationing by the spoon theory. In it, energy is represented in the form of spoons. Let’s say each day you only have six spoons. And each task — showering, making breakfast, running errands, getting or making lunch, a few hours of work — costs one spoon.
Imagine it’s the evening and your friends want to go out to dinner and a movie. The adventure sounds fun, but it will cost two spoons, and you only have one left. No matter how much you want to go out and do everything, your body just won’t let you. I’ve been there, and now that’s what my fiance is beginning to realize.
A week ago his heart stopped and he collapsed in our home. I had to do CPR while I called 911, and he was subsequently hospitalized for days. He’s been having cardiac issues for years, but none of the hospital tests indicated he’d had another heart attack. Instead, his collapse was caused by chronic obstructive pulmonary disease.
He’s had a severe cough for well over a year, but no doctor had been able to figure out the cause. This time his heart stopped because of a severe bronchospasm that crushed and compressed his heart, causing it to stop. Neither of us knew that was even a thing. And worse, it could happen again at any time. He has a stack of new medications and inhalers and may need more, but he’ll always be at risk of it happening again.
It’s the strangest thing to feel cognitively normal and mentally fine, but your body isn’t corresponding to that — as if it’s betraying you.
Being able to work, shop, party, travel, exercise, or just clean is something I took for granted, so it pains my heart to see the man I love struggle with a lot of the same challenges as I did. But though it may seem strange to say it, I’m glad I’ve been through that experience. I can sense the emotions he’s feeling, do things to make his life easier, and offer the sympathy and empathy he needs.
Frustration, grief, anger, fear, worry, uncertainty, confusion, anxiety, hopelessness, embarrassment, shame, overwhelmed: I felt them all and still do from time to time. But the one situation I hope my fiance isn’t feeling is that of being alone. It’s hard to go through a major life event and health change. And it’s even harder when you feel alone.
Note: aHUS 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 aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.
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