Embarrassment was an unexpected part of my aHUS journey

It’s normal to feel embarrassment, discomfort, or shame in medical situations. Being in a vulnerable state can be a humbling experience.

In September 2020, I nearly died from multiorgan failure caused by atypical hemolytic uremic syndrome (aHUS). I still haven’t wrapped my head around it.

I ended up being hospitalized for two months — so long I felt like Adele at a Las Vegas residency. Thankfully, I was able to wear my own clothes and only had to put on hospital gowns for procedures. But there were plenty of other opportunities for embarrassment.

I hate asking for help. I’ve spent my entire life being Miss Independent. Before I got sick, I was at my peak, but suddenly I was in the hospital and needed help using the bathroom. This was a hard blow to my self-worth.

But despite almost dying and spending weeks in the intensive care unit (ICU), I still thought I wasn’t that sick.

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At one point, I became concerned about my car in the parking lot outside the emergency room (ER). When a car sits too long, the battery can go dead, and I’d already been in the hospital for four weeks. I knew I needed to run the car to charge the battery. The last thing I needed was another big expense.

So I thought it’d be smart to march down there and start my car. I figured I’d rest 30 minutes while it ran, and then I’d have the strength to walk back. But first, I had to persuade the nurses to let me walk the ICU hallway and connected breezeway. This took two weeks.

Finally, I was able to prepare for my journey. As I checked the mirror, I thought, “Oh, God. I look awful.” I had dark, sunken eyes, four IV leads, three hospital bracelets, and huge purple bruises from blood draws and thrombocytopenia. I’d also lost 15 pounds and some muscle mass. I definitely didn’t look healthy.

Still, I told my nurse I was heading out to take my “usual walk” around the unit, figuring I’d be back before she even knew I’d gone anywhere.

What I wasn’t prepared for was how large the hospital was. It’s one of the biggest in the area. To make matters worse, I’d entered through the ER but had been moved to multiple locations before I ended up in the heart hospital’s ICU. I realized I had no clue where I was going.

I wandered hallways and rode elevators for what seemed like hours. I was exhausted, walking slowly, and short of breath. My mind was fine, but my body refused to function appropriately. And because I looked like I had the plague, people looked at me strangely, which discouraged me from asking for help.

But finally I made it to the ER waiting room. I walked past the front desk like everything was fine, though I could feel people’s eyes burning holes in me. I made it to my car, started it, sat for 30 minutes, and felt proud of my accomplishment.

Now I had to walk back. High on the thrill of what I’d done, I believed nothing could stop me. I approached the sidewalk, where the curb was a few inches taller than the asphalt. I lifted my right leg to step onto the curb, and it happened.

I fell — hard.

I’d never experienced a fall like that one. There wasn’t pain, and my joints didn’t crack. My leg just gave out, as if it were made of cotton candy, or I’d stepped off a pirate’s plank into thin air.

To make matters worse, there were security guards right in front of me and several people in the parking lot. One woman was walking right behind me.

“Are you OK?” she asked. No, I wasn’t. My leg had just turned into a ghost. Still, I tried to play it off.

“I’m fine. I just … need to tie my shoe.”

Smooth, Shay. Totally believable.

After she walked away, I tried to get up, but realized I was too weak. I began to panic.

During my struggle, I noticed the woman from before talking to the security guards and looking over her shoulder at me. One guard got on a walkie-talkie. I had become a situation.

Within 90 seconds, nurses arrived with a wheelchair. And here I thought today couldn’t get any more embarrassing. But I knew I needed to respond with humble acquiescence. Once I was back in the ICU, I was promptly grounded for days and not allowed to take walks without a chaperone.

Sometimes you have to ask for help. As patients, we shouldn’t be embarrassed to require assistance. While a medical journey can be exhausting, embarrassing, and difficult, we have to remember that medical personnel deal with these situations every day. As humans, we’re all perfectly imperfect.

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.