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I Wish I Opened Up to the Flight Attendant About My Invisible Illness

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Due to my chronic disabling condition, Ehlers-Danlos syndrome (EDS), I’m used to getting bad looks or comments from people who do not understand why someone who looks so fine can be this sick. 

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

But this experience was something else… In a moment when I actually expected to be treated with respect and understanding, I was met with more ignorance than all the years before.

I am living with EDS and a very unstable cervical spine, which is a huge problem if you have to travel alone. Cervical instabilities can affect the whole body. In my case, I had a hard time with walking longer distances, blurred vision and numbness and weakness in my arms. I’m not allowed to lift anything, and I’m supposed to walk with caution.

All my diseases led to the decision that I needed to see some specialists in another country. I was more than scared to fly alone with a lot of luggage, but I was told by the airline I would get the help I need without any problem.

I’m not a person who lets anyone see how I feel. I used to hide my pain and problems behind a smile, and I try to be as mobile as I can. But this time it was different. This time I really had to take a helping hand if I wanted to get off this plane without being bedridden for the next few weeks. I couldn’t just push through my symptoms as I used to do before. I booked a wheelchair and told everyone I couldn’t lift my carry-on luggage.

As you can imagine, people looked confused, and sometimes I heard them whispering bad things when they saw me, a young woman in her 20s, get out of the wheelchair and walk to her seat after I was brought to the gate. A lot of people don’t understand you can still use your legs but need a wheelchair anyway. I know I shouldn’t feel embarrassed, but I always do. It’s hard for me because sometimes people make you believe you’re just lazy and actually don’t need this help.

At the gate, I wanted to make sure I was allowed to preboard and the crew knew I needed help to store my carry-on. I was told if I really need to preboard, that’s OK, and they could also check in my carry-on. I tried to explain it’s not possible because I had all my braces and medication in my carry-on in case I needed them during the flight. These items are expensive and I can’t lose them.

When the flight landed, I asked again if someone could assist me with my carry-on luggage and I, for the first time, experienced the ignorance of someone who was supposed to help without judging me. When I asked a crew member to support me and lift my luggage for me, she told me if I was not able to lift my luggage by myself, I should leave it at home the next time.

This one sentence made me not only sad, but it also left me feeling like I maybe don’t need the help. Maybe someone else is worse off than me and needs it more? Instead of telling her she’s not in a position to judge me, I left and carried my luggage alone.

One week after, my body still struggles with the consequences. I probably should stop pretending that I’m fine so everyone can see my pain. But that’s just not how or who I am.

I wish I’d told her that long-distance flights feels like torture to me, that all my joints hurt, that my legs went numb from sitting on the hard seats (even with my seat cushion), that I couldn’t sleep because I cannot allow my cervical spine to relax while I’m sitting upright. I wish she would’ve recognized my neck brace and that it’s there for a good reason. I wish she knew how scared I always am if I have to fly by myself.

I wish I’d just stop pretending I’m fine and tell people how I really feel. I wish I’d told her how hard it is with an invisible illness like Ehlers-Danlos syndrome.

Nobody should judge someone just because they look fine. They might be in a lot of pain or are just too proud to show their pain. Maybe the crew member was just having a bad day. Maybe she was hiding something, too, and I didn’t notice it. Maybe I should have asked her if she was OK.

Originally published: July 23, 2015
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