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When I Didn’t Want to Accept I Needed Help While Traveling With a Disability

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I was diagnosed with hypermobile Ehlers-Danlos syndrome (EDS), a genetic condition, in February of this year. While my illness has become a larger part of my day-to-day life in the last several years, it has always been there. EDS can present in a lot of ways, but for me it means that I live with intractable (constant) migraine with aura, occipital neuralgia, fibromyalgia, chronic fatigue, chronic neck pain caused by premature degeneration in my spine, asthma, gastrointestinal motility disorders, and suspected mast cell activation syndrome and dysautonomia among other things.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Recently, I went on a weekend trip to West Palm Beach, Fla. for my sister’s wedding. It was pretty fabulous, but it also wore me out. Don’t get me wrong, I’m celebrating the fact that I was even able to make this trip. It wouldn’t have happened a couple of months ago. Still, this trip made me realize that the biggest hurdle I’m currently facing when I travel is accepting my own limitations.

Throughout the trip, I certainly did some things correctly, but I also created a lot of my own speed bumps because of my apparent difficulty accepting that I am no longer able-bodied. I say apparent because if you asked me straight out whether or not I have a disability, I would say that I do, and I would explain my illness to some degree. Despite the fact that I am becoming more willing to talk about how my illness is shaping my life, there is still a part of my brain that does not want to believe I am disabled. This part of my brain makes me do things that make navigating my life, and traveling for instance, more difficult than it should have to be.

Here are some examples of things that I did on this trip to make my experience more difficult:

1. Traveling a long distance over a weekend. I did not allow myself the time my body needs to recover, and as a result I’ve been mostly housebound since returning.

2. Working late the night before my trip, even though I knew I had to leave early in the morning.

3. Staying up late the night before my trip. I was hosting family members and for some reason I decided that visiting with them was a bigger priority than pacing myself. I woke up the next morning with an intense level of head pain that made every inch of my trip significantly more difficult to bear.

4. Waiting until the night before the trip to pack. This is classic me. I’m pretty sure I packed for college beginning at 11 p.m. on the night before I left. If you’re anything like me, you can’t pull this off anymore. I promise.

5. Also, I packed a bag that does not roll because my able-bodied husband suggested it would be less likely to be gate-checked. I should have realized that the possibility of gate-checking was way less important that my actual ability to handle said luggage. I ended up having to ask my parents and brother to help me with it. This was embarrassing. (Although I probably didn’t need to feel this way, I did.)

6. I did not pack sunglasses or earplugs. I was embarrassed of my need for them, and so I waited until I got to Florida to obtain them. I should have just asked my family to make a pit stop at one of the 1,000 stores at the airport, but instead I endured extra pain because I wanted to look “normal” (whatever that means).

7. I did not take an available train through the airport to meet my family because I thought I “should” be able to walk. I unnecessarily ended up with bruises, aching joints, and increased fatigue from this struggle I chose.

8. When I did take airport trains, I did not always seek out a seat, because I thought that someone older than me might need it. I need to recognize that just because I am not young does not mean that I don’t have a legitimate need for a seat. Disability does not discriminate.

Looking back on my trip, I learned a lot. I learned that although I am outwardly becoming more accepting of my disability, there’s still an inward struggle to accept myself as I am and allow myself the accommodations that would make life easier for me. I’m not sure why this is so hard for me, but it is. I’m going to forgive myself, and hopefully next time I won’t stand in my own way by creating these kind of road blocks in my travels. I don’t know for sure whether I will manage, but if I don’t I’ll have to forgive myself then, too.

If you have recently been diagnosed with a disabling condition, and are struggling to accept this internally, I want you to know that you are not alone. I know that you want to push yourself to do everything that you used to be able to do. I know that you feel guilty for no longer being able to do those things. Please, take a minute to think about whether you’re making it harder than it needs to be. Accept yourself as you are. Allow yourself the liberty to ask for help, or the accommodations that will make your life (and travels) smoother. Lastly, forgive yourself for getting in your own way! I’ll be over here trying to the same!

a faraway shot of a sunny beach
A picture from Sara’s trip.

Follow this journey on ZebraWrites.

Originally published: May 5, 2016
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