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.
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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.
About the Author
Comments
Jose
I am travelling in Australia right now. My chances of successfully getting on a plane would be zero without my husband to assist me. We took one flight and are returning home by road. So far I've had to skip a shower in bathrooms in two motels because of the degree of difficulty in accessing the shower. I've now phoned ahead to change the final motel bookings, to rooms with rails in the bathrooms, a level or 'one step' entry into the unit and a car park spot right outside the door. Getting in and out of the vehicle is also a challenge. We plan our rest stops around disability bathroom availability. That's become more important than any sight seeing opportunity. My major travel wish right now is to get home asap, to the comfort of my armchair, the memory foam mattress (ah, the luxurious memory!) and to being able to make myself a coffee or meal without banging into something. On the plus side, I am touched by the kindness of strangers. I've learnt it's best to explain "I'm struggling" as i did today while on a call to change a motel room booking. It's taken me a long time to learn to be gracious about accepting help when it's needed, or more importantly, asking for help. I'm getting better at that with practice. I've also found a smile goes a long way to make people feel confident to approach with offers to assist. Just today I rolled up to a fast food doorway (why do so many doors open out and why are they spring loaded?) and sat there to wait for someone to open and hold the door for me. It took less than a minute for a young woman to say cheerfully "let me get that for you". Those moments remind me that many people are willing helpers when they know help is welcome. Bur dang, it will be good to get home!
Amy Gietzen
Wow! Thank you for sharing your traveling woes! I appreciate your candor and I know you can truly relate to what it takes to prepare for a journey, if any kind.
Gaynell Harding
I understand and sympathize with you, although my diagnosis is limited scleroderma, which my rheumatologist told me was "the good kind". I am 68 and am struggling with this diagnosis as I am a breast cancer survivor and went through the whole journey of treatment in 2008/2009. I am grateful of making it through that journey, but then in June 2020 I had a heart attack followed by open heart surgery to replace my LAD artery, another grateful time in my life. To be diagnosed with Scleroderma Dec 2020 was something I knew nothing about except what I researched online. This past year has been quite the learning experience with all the symptoms I have been having, constant Raynauds of my hands, never getting relief, and now gastrointestinal and stomach issues. This is all very hard to handle especially since there is really nothing that helps any of the systems. I pray that a treatment will come available to help us with this really devastating disease. I pray for you Amy and all people suffering from any autoimmune diseases. So hard to believe that there are really no medicines to help us.
Teresa Budrewicz
My sister Laurie we’re both diagnosed with Scleroderma . My sister also had pulmonary hypertension , and I have rheumatoid arthritis . We traveled as much as we could road trips, planes and cruise ships. It’s a lot of work preparing for any trip but the more we traveled the easier it got. On road trips we never started our trip early in the mornings. We both needed at least 2-3 hours just to get moving. We only drove 6 hours a day and always booked hotels ahead of time so we would have handicap rooms. We would also pack gluten free snacks because it is not always finding food we can eat.
If we fly we found southwest treated the handicap people the best. I get wheel chair assist as soon as I get out of the car. They help check my luggage get me through security and take to the restroom and to get a coffee before the park me I front of my gate. Then when I land they are always right there and they take me to pick up my luggage and restroom . Then they wheel my out with my luggage to where I am getting picked up. If I am traveling for a event I alw any go a day earlier and stay a day later. Traveling takes a lot out of me but if I plan to rest the day before I can enjoy the event.
Always carry you prescriptions with you and a med list along with any medical equipment and a overnight change of clothes. I have been traveling since 2014 and as long as I can keep moving I will keep traveling. It gets easier to prepare for travel . But it also gets harder on my body and energy level I just prepare for these things . There is still lots to see it just may take me longer .
Amy Gietzen
Thank you for sharing your tips and memories with me!
Priscilla
Has anyone used TSA Cares program?