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Why Asking for Help Is Hard When You Don't Look 'Disabled Enough'

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Asking for help can be challenging for anyone. When we ask for help we step into vulnerability in admitting there is something we cannot do for ourselves. But for people with an invisible disability, this is something we have to do over and over again and we are often denied the help we need.

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

I look able-bodied but I have hypermobile Ehlers-Danlos syndrome, which for me causes chronic pain, joint subluxations and often debilitating back spasms. I can walk. I can carry things. I can do quite a lot of things a lot of the time. And most of the time I am in pain when I do these things.

Living with chronic pain, it becomes like white noise. The pain is there, it’s annoying, and I pretend like it isn’t there so I can keep doing what I’m doing. And because of this, it looks like I’m just fine. But when I pretend the everyday pain isn’t there, I do things that make it worse. It turns into the pain that is harder to hide. The wince when I turn my head too quickly. The “ow” when I reach for the top shelf. And the limp when I’ve walked too long on an aching knee.

It’s hard to avoid this. I have to turn my head quickly when I’m trying to make a left hand turn. I have to reach for the top shelf because I’m only 5 feet tall. And I have to walk because I’m not disabled enough for a disability parking placard.

I have described to you my low and medium pain days because this is the majority of my life. I’m lucky enough to have few debilitating high pain days. But let me go back a little bit and say this one more time: I. Am. Not. Disabled. Enough.

Let that sink in. Really mull it over. No, I’m not saying I want to be more disabled. I would never wish for this. But because of how abled I am, because of how abled I look, I am not offered the help I often need. So I have to ask for it. Over and over again.

I have to advocate for myself to all of my doctors. I have to ask for referrals that aren’t obvious to my primary. I have to seek out the answers myself and then go to my doctors and tell them what tests I need. And when you do this, you become the “hypochondriac,” the “pushy” patient, the “complainer.” It’s hard to be seen as the proactive patient who is just trying to make their quality of life better.

In my day to day life, asking for help is hard too. Asking to sit down when there aren’t enough chairs for everyone makes me the “selfish” one. Asking someone to move or lift something makes me “lazy.” I’m often not seen as my own advocate, I’m seen as high maintenance. Every time I ask for help I am stepping into vulnerability. Again and again I am peeling layers of my protective shield off and exposing my weaknesses. I am sharing with someone in what ways I am not able to do something for myself.

There are lots of times where I am helped in exactly the ways I need without feelings of judgment. But there are also times when I am met with “no.” And it’s those times that make vulnerability even harder. Harder to ask for what I need for fear of judgment, for fear of being thought not disabled enough to be helped.

I don’t have a solution or hopeful words to end this piece. This is the way it is right now. Maybe as awareness of invisible disabilities grows it will become easier to get the help we need, but I don’t know what the future holds. I can only hope someone reading this will feel they are not alone in these struggles. And that maybe someone else will recognize this in a friend, a loved one or a patient and offer up the help that is needed.

Getty image by Anya Berkut.

Originally published: January 3, 2018
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