Follow the path of the unsafe, independent thinker. Expose your ideas to the dangers of controversy. Speak your mind and fear less the label of ‘crackpot’ than the stigma of conformity. And on issues that seem important to you, stand up and be counted at any cost. ~ Chauncey Depew

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You know, it still shocks me when I run into bias or stigma against illness. It shouldn’t – but it does.

Having MS, there is a stigma – a stigma regarding chronic illness and personal capacity. People assume you will quit work immediately, or that you will never  be able to participate in activities, or that life is generally over for you and your family. (Seriously – I have run into that.) But much of that can be mitigated to some extent by personal health management. Admittedly, many people who are hard hit my MS have visible limitations, but a large part of people with MS lead quiet lives managing their symptoms, and doing everything in their power to lead as normal a life as possible. And typically, the first reaction a person shows to hearing you have a chronic illness like MS is compassion and sympathy.

Not so with a seizure disorder.

I was dumbstruck the other day when I was traveling home from a business trip. I was travelling home alone from Calgary, and I did as I had been advised by my neurologist for such cases: I informed the flight boarding staff that I had a seizure disorder, and gave them pertinent information. (Note – I have travelled many times alone on business and done this very thing before.)

Much to my surprise, instead of being met with compassion and gratitude for my disclosure (as this helps them do their jobs proactively), I was met with fear and put on notice that I may be refused boarding. WTF????

I was shocked – then livid. Thoughts ran through my head simultaneously, such as: “ExCUSE me?” “Why did I say anything?!?!” “I have survived childhood & domestic abuse, MS and multiple seizures – and you think your fear is gonna stop me from getting home on this plane??? HAH! ” “How DARE you try to keep me from my family through your ignorance!” “What’s next? Are you going to refuse diabetics boarding privileges – they could have an urgent situation. What about people with high blood pressure? Past heart attack patients?””This person has no clue about seizures – I should take the opportunity to educate her now…seriously!” Of course, all this ran through my head in split seconds – and I did not say any of this out loud.

I didn’t go all “corporate dragon lady” on them (as my sister likes to say), but I definitely stood taller, and my voice got much firmer as I dealt with them. I became seriously resolved, and solid as hell.  In the end, the issue was resolved, and I boarded the plane.

But it got me thinking about the stigma – and one’s ability to deal with it. Seizures, as I have discovered, seem to evoke a fear and stigma quite different than that of MS. MS seems to be “socially acceptable”, for lack of better words. But seizures…well, seizures are scary. Seizures can be messy. Seizures means knowing what to do in an emergency. Seizures mean…well, for someone not educated in what seizures are…seizures mean that the person is often perceived as a walking time-bomb, and you don’t want to be around a bomb!!

I consider myself lucky – lucky to be the person I am, as educated as I am, and as strong as I am. Yes – I have random tonic-clonic seizures. Yes, they are scary, and yes, I lose consciousness which means I need help. But I also have a brain that works. I am very well educated and I have the ability to manage my health to mitigate health issues. And I have the self-esteem and self-confidence that comes from age and experience to stand up to yahoos who express un-informed fears and stigma. I am not afraid to stand up for my rights, and when faced with such bias, I have the ability to make myself be heard.

But what about those people out there that DON’T have that life experience, or that self-confidence, or whose self-esteem is already hard-hit due the their seizure disorder? Those people who have been rejected, turn away, left by friends or family, as a result of life and/or illness? Running into that kind of bias and stigma that I experienced from an airline attendant can be absolutely devastating. Self-esteem can be seriously damaged. This in turn affects how that person copes.

Bias and stigma like that make people hide themselves. And no one should have to hide themselves – seizure disorder, chronic illness, or other.

I believe I now need to look deeper into this cause and see where I can help make a difference…no matter how small.

“One must have the adventurous daring to accept oneself as a bundle of possibilities and undertake the most interesting game in the world, making
the most of one’s best.”
– Harry Emerson Fosdick

Namaste

Carolyne

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