The Traveling Woes I Face as a Scleroderma Patient
My traveling days have been few and far between since I was diagnosed with systemic scleroderma in 2001. Now, it’s even more difficult due to the COVID-19 pandemic.
However, I was invited to participate in an ad that will promote clinical trials, so last month, I traveled from my home in Buffalo, New York, to the Big Apple. I was so excited to be involved. Plus, the city was on my “bucket of fun” list, which I created after realizing that scleroderma would eventually take my life.
Travel gets complicated with scleroderma
I used to be a jet-setter. Hopping on a plane and arriving at a different place a few hours later was a great stress-reliever.
Now, traveling leaves me feeling defeated, and my days of flying solo are long gone. I’m exhausted by all the hurrying and waiting, and I grow frustrated with the constant questions about my illness. My limited hand motion and moderate lung involvement create extra challenges. I must arrive extra early to check in and ask for assistance through security, at my gate, boarding my flight, and deplaning at my destination. The routine starts all over when I fly back home. Fortunately, my dad now serves as my travel buddy, not that he minds. He gets to take a trip, and I get help with my luggage.
Additionally, the number of hoops I have to jump through while traveling would make any circus actor dizzy! First, there are the security guards, who sometimes yell at me if I’m moving too slowly. Some also seem frustrated when I request extra help. It’s not my fault that I need a wheelchair or can’t lift my arms completely above my head!
Then, there are the side-eye looks and constant stares I receive from my fellow travelers, who seem to be judging me for requiring assistance. It’s as if they’re thinking, “Fraud! You’re not disabled! You look completely normal.” Have they never seen a young adult in a wheelchair before?
I can’t describe how disheartening it is for people to treat me like I’m less than human, or like I’m faking my illness to board the plane first.
Navigating problems in New York City
My recent trip to New York involved several unexpected complications. When my dad and I arrived at the hotel, I knew we were not off to an amazing start. Of the three restaurants in the hotel, only one was open for service, and it only served one menu item: skirt steak with French fries and greens. Most people might have eaten it and been satisfied, but I have dietary restrictions due to scleroderma, and can’t eat red meat.
You may be thinking, “Go out to eat somewhere!” However, this wasn’t really an option due to the pandemic and my suppressed immune system. So, we had a pizza delivered at 8 p.m., which I thoroughly enjoyed — even though I suffered heartburn the rest of the night.
I finally fell asleep around 4 a.m., and had to wake up at 6 a.m. for the ad campaign shoot. We shot the ad all morning, and I finally shoved a small wrap down my throat at the airport later that day.
Remember to treat others with kindness
Please understand that it is not my intention to whine or complain. I simply want to educate others about all the complications and planning involved in a chronically ill person’s life. Every day is filled with obstacles to overcome. I’m trying to live as normally as possible, but I never quite achieve “normal.”
The next time you see a disabled person, please consider, if nothing else, how much they likely had to prepare to venture out into public, and be kind enough to smile their way. Simple acts of kindness can go a long way for a person whose everyday existence may be a struggle.
Note: Scleroderma 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 Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.