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Here's a question that never seems to stop:
"What's wrong? You. Look. Fine!"
'Invisible' disabilities and mental health challenges come with their own unique realities. Patients face an unfortunate choice.
When most people think about disabilities they usually think of those conditions that are 'worn' on the outside: the wheelchair user, a person with a seeing-eye dog, a facial difference. Other disabilities are hidden. At surface level the person 'looks fine', 'seems healthy', and has two choices:
Out yourself and face the danger of being treated as less than.
Hide it and risk fear or mistreatment if it ever comes to light.
I'll lead with the challenges, and then try to convince you to go with option 1.
Let's weigh the pros and cons patients often consider internally.
Option One - 'Wear it' (Figuratively)
If you out yourself and are up front, you may or may not receive equal treatment.
As an example, people living with epilepsy face a 50% unemployment rate. Employers ask questions internally like, ‘what happens if a workplace injury happens and we are liable?’ ‘are employees safe around this person?’, as well as spread mistruths caused by conflating drug abuse and other stigmas. All of which can be prevented by an honest conversation and a willingness to ask questions.
The Pros
You are best positioned to ask for, and even demand the accommodations you need to thrive. It's the only way to practice confidence. No one will offer you support if you can't say that you need it.
If people around you understand how to best support you, they may feel more confident in being close to you. Unknowns are scary. The people around you look at you to know how to feel about this news.
The Cons
Without risking it for the biscuit, you can't know if exposing yourself means more support...or less.
The never ending questions need to be fielded: Why do you need to work different hours? Why do you need to come to school late? You can't drink OR drive? Why? Are you an alcoholic?
One has no choice but to lay out all of the things one cannot do or risk being read as overreacting, needy, or worse - helpless. How demoralizing.
When I worked at epilepsy camp, I was struck by how many kids felt the urge to explain their epilepsy before sharing their own name. Think about that. Exposure as a survival mechanism.
Option Two - Hide
The Pros
When the person chooses to hide the disability, they may pass as 'normal'. They appear to be like anyone else and may benefit socially. Great! Maybe.
The Cons
What happens when you need accommodation? People with epilepsy often suffer from these social gymnastics: How do you explain not wanting to drink because of your medication? How do you explain that you can't join the social event for self care reasons? The need to lie becomes greater and greater until it has repercussions of its own.
And when the disability does come out?
(A reference my younger audience will miss out on.)
I'm shocked by how many friends tell me that their doctor instructed them to make a secret out of their disability.
There's no right answer. But it's important to be empathetic and receptive.
At the end of the day, people face this difficult choice because cruel judgment is real. We assume a person's needs and limits without asking them. People with disabilities often know exactly how they want to be treated and what they need to be successful. Usually that starts with listening.
Confidence is Key
Something I've learned and observed over the years is that people look to you, the person facing challenges to see how they should feel about this new information. If you are scared, they will be scared. If you can lay it out cleanly and make them feel prepared (if applicable) they tend to be confident as well. Do you look embarrassed? They will respond accordingly.
It's hard to get what we need unless we learn to be confident. Speak up. If you speak up, it makes it safer for your neighbor to do the same. For someone else down the road, it won't be hard to ask for what they need. To get there, we first have to make that difficult choice.
That's what Under the Lights is all about. If you are interested in our movement, check out the Under the Lights short film, now a full movie in post production. The biggest moment for epilepsy awareness EVER.
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