Travel is never easy with chronic illnesses like aHUS

I had to stand on my toes and take a deep breath in order to reach my carry-on luggage and drag it down. Then I wiggled my heavy weekender bag out from the seat in front of me where I had forced it to fit. I had an aisle seat, so two strangers waited for me to move out of their way, along with the passengers behind us.

I got my bag attached to the carry-on suitcase and began walking the length of the plane because, of course, I was near the back. I shuffled down the aisle, off the plane, and into the extended bridge leading to the airport. It was an uphill hike with my overpacked luggage, and then it was a downhill trek. What was I thinking making this trip?

I arrived at Miami International Airport, one of the largest airports in the U.S. The airport is so big that I had to download an app and follow a map. Then I hiked from one concourse to another, which involved several long stretches of tunnels and corridors, followed by four escalators and a Skytrain.

I eventually made it to the gate for my connecting flight and saw several other passengers who had made the same trek as me. We were all exhausted. I went to the little snack stand and grabbed a drink and some popcorn. I flopped down in a seat, worn out from 45 minutes of speed-walking. Our first flight had arrived late, so we were all terrified of missing the next one.

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I was sweating profusely and had run out of breath. My heart was racing. My skin was sticky and clammy. I was shaking uncontrollably. And I could hear and feel my heartbeat in my ears.

When I overdo it, my hearing becomes muffled, like I’m underwater, and I start to hear a high-pitched ringing. “Come on, Shay, focus,” I thought. I began to cool off and regain my composure.

Then the distorted sound of someone on the intercom interrupted everyone’s conversations.

Our next flight was … delayed. And, of course, it would depart from a different gate — far away from where we were. I was so upset and overwhelmed that it took all my strength not to start sobbing.

This is what it’s like to suffer from a debilitating disease and receive regular treatment. In September 2020, I was dying in the ICU for nearly two months due to a rare disease called atypical hemolytic uremic syndrome (aHUS). The initial attack of the disease caused multiorgan failure and permanently damaged my kidneys, liver, heart, and uterus.

As part of my medical treatment, I receive a Soliris (eculizumab) infusion every two weeks to stop my immune system from attacking my red blood cells and organs. The medication causes several side effects I must deal with along with the many aHUS symptoms. In my case, the worst are extreme fatigue, muscle weakness, and bone and joint pain. I also lost a lot of muscle mass while in the ICU. I have no stamina, and it’s hard to walk for any length of time.

I avoid tour groups and girls’ night out because I can’t keep up with everyone. I fall behind, grow short of breath, become overwhelmed, and then get upset. Who wants to party with that? So I politely bow out of lots of social events and public tours.

It’s a very strange experience to be cognitively competent but have a body that won’t perform in ways that it could before. It makes simple, everyday things like taking your children to the zoo or going on a history tour panic-inducing. I love traveling, but navigating airports is daunting.

You’re probably thinking, why don’t you ask for help? I’m nearly 40, and I have an invisible disease. To the untrained eye, I don’t look sick at all. So I hate the judgmental looks I get on the rare occasions when I do ask for help. People can’t see my dangerously low kidney function, my climbing blood pressure, or the deteriorating cartilage between my bones.

This experience has brought a whole new meaning to “don’t judge a book by its cover.” Now I don’t assume things about other people the way I used to. And I also don’t take travel and adventures for granted anymore. Being fortunate enough to still experience the world despite my illness is nothing short of walking on water.

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.