invisible…

invisible…

Today marks the end of Invisible Illness Week and, as you may remember, October is Dysautonomia Awareness month. In the past I have helped organize events and fundraisers during the month of October, but didn’t get around to it this year. I’m setting it as an intention for next year.

If you’ll bear with me, I’d like to tell you a story that illustrates why dysautonomia and invisible illness awareness are important to me. As you know, I recently traveled to my hometown to spend time with my mother while staying alone in my sister’s house. Although the flight to my hometown is only one hour, airport navigation is difficult for me. When you think about it, airports are just one long, slow-moving line after another. First, to check your bag and get your boarding pass. Next, to pass through the security checkpoint, and finally, to board the plane.

I am unable to make it through all that standing and come out vertical and conscious, so I use a wheelchair at airports. I will write a separate post sometime with tips for navigating airports, but for now, I’ll just say that using a wheelchair is the only thing that allows me to make even that short one hour flight.

So, on my recent trip I utilized a wheelchair. Most airports have at least two distinct lines for security: one for pre-check passengers (those who have undergone a rigorous background check and been approved by the TSA), and the regular line. Some passengers with disabilities also receive the pre-check boarding pass. I never have, and so my wheelchair attendant wheels me through the regular line.

For some reason unbeknownst to me, the wheelchair attendant usually wheels me to the front of the line, bypassing dozens (if not hundreds) of anxious passengers eager to get to their gate. I’m able to stand up for 5-10 minutes at a time – long enough to remove my shoes, portable electronics, and jacket – and the wheelchair attendant waits for me on the other side as I walk through the metal detector/scanner. As I arrived at the scanner, the woman in line behind me, the woman I had just been wheeled in front of, said to the gentleman next to her as I stood up and took a few steps, “I wish I could fake a disability to avoid waiting in line.” The comment was spoken softly, and I’m sure the woman did not intend for me to hear it. But I did, and I felt it.

Friends, I get it. I am probably below average weight and above average musculature for a woman. In the yoga pants and t-shirt I was wearing that day, I may have even looked a little bit athletic. Regardless, I don’t look sick – whatever “sick” looks like.

I’m not looking for special treatment. I don’t mind if my attendant wheels me to the back of the line, and I sit in that chair, moving inch by inch to the front of the line, like the rest of the passengers. I don’t mind when I have to take off my shoes, or pull out my laptop, let TSA feel my bra strap, or stand still while frisked (*cough, molested) in the name of public safety.

Naturally, I was a little surprised by the woman’s comment, as I will wait forever, so long as I have a place to sit. But I have no control over airport policy.  So, I did something I’m not proud of:

I faked a little limp.

I know, I know. Friends, I KNOW. It’s horrible. HORRIBLE. I’m ashamed to even tell you. I’m a traitor to all my invisible illness warrior friends and to everyone with a disability who works to hard to educate the world about what disabilities look like.

But here’s the thing: educating the world is exhausting. Fighting ignorance and insensitivity is an uphill battle, and travel days are already a mountainous-sized uphill battle of their own. Sometimes cutting in with a “actually, I have a chronic illness that affects my heart…” falls on deaf ears and leads to a war of words with no winner. I should always try to educate ignorant people about the different kind of disabilities. I should remind them that many illnesses, like diabetes, arthritis, fibromyalgia, depression, and even many stages of cancer prior to chemotherapy, are invisible. I should, but I don’t every time. Sometimes I just let it go.

I admit to some smug satisfaction when I hobbled forward on my fake injured leg, pleased that no one seemed to notice the injury mysteriously alternated between the left and right leg, and turned around to glare at the woman. She looked contrite, but my shame took away any meaningful joy. All I did was confirm her ignorant belief that all disabilities are visible.

I can sit or lie on the floor to reserve my place in the security line, but that receives as many comments and stares. You don’t get to call us “lazy” for sitting/lying on the floor of a dirty airport, but also accuse us of being lazy when we use a mobility aid. You can’t advise us that our “problem” is that we just need to get more fresh air, then chastise us when we use the necessary accommodations to get out for some fresh air. It doesn’t work like that. If the invisibility of my illness makes you uncomfortable, that’s your issue. I should’t have to fake an additional disability to match your misguided and narrow view of what disability looks like. I don’t want to fake an additional disability because you’re not comfortable with the one you can’t see.

Happy invisible illness week to all my invisibly ill friends! Thank you for your hard work to bring awareness, for all of us.

“When we are no longer able to change a situation, we are challenged to change ourselves.” – Viktor Frankl

Smell ya later.
– Linds

 

9 thoughts on “invisible…

  1. Good on you for admitting this! I do it all the time and, while I’m not proud, it gets me through the day without confrontation which I just can’t cope with. I have a permit which allows me as a disabled person to park in places other people can’t. I do only use it on my bad days, but when I park on a yellow line or in a disabled baby I make getting out of the car look as difficult as possible (even though it’s not) just so that people won’t pass judgement on a “healthy” looking person using a disabled space 🙁

    1. Using disables spaces gets the worst glares/comments! I have quite a few friends that were aggressively confronted for (legally) parking in a disabled space. I agree – easier to fake it and avoid that mess, which will cause an entirely different set of symptoms on its own!

  2. I now book disability assistance all the time when I fly. I used to endure the long lines. No one can see how physically demanding standing still in line is when you are in your
    30’s and 40’s.

    I don’t need the anxiety of fearing getting symptomatic standing in lines anymore. I have my medic alert chain with my
    Diagnosis on it and a large ziplock bag of my meds when I fly.

    We need short lines- especially when travelling alone.

    Never had a problem. Yes I am always the youngest person with all of the seniors, it saves my energy for what I want and need to do

    Cheers

    Corrine

  3. I may or may not be guilty of this when I have to stand up to reach for/do something in public with my wheelchair. Now I’m visibly disabled with my knee braces, but before…the amount of STARES I got when I moved my legs to even simply shift my seated position were laughable.

  4. Oh Linds, I soooo understand!!! Funny thing is, I park in disabled at Walmart and my disability is invisible getting out of the car. But after shopping, I don’t HAVE to fake limping back to the car… I’m so sore and weak and stooped over and exhausted that I literally can hardly walk, I look like my body is not going to make it back to the car… My disability becomes visible after an hour of shopping once every 2 weeks or so!

  5. I have TSA Pre-check, so it’s not as bad for me as it could be. Yet, I’ve made myself incredibly sick each time I’ve flown since diagnosis and looked longingly at the wheelchairs. The consequences of one airport trip last days. How do you even go about getting one?

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