To the ALS ice bucket haters

Over the past week the ALS ice bucket challenge has taken the world by storm.  For the most part it has been met with laughter and of course much needed awareness and fund raising. But, as with everything, there have been some haters out there.

Why ALS? How is this helping them? When will it stop filling up my social media news feeds?

While all these comments annoy me, there’s one comment that bugs me the most: We should be raising awareness about [insert disease here] instead.

This comment has come up in support groups I’m a part of on Facebook for my various illnesses.

Sure, it would be great if the world could be exposed to illnesses X, Y and Z, but it’s not. Maybe one day a similar campaign will reach this scale, but if you consider how many diseases are out there…I wouldn’t hold my breath waiting for my illnesses to become major news items. And the truth is, I think there are illnesses that need this kind of exposure more than mine do.

In having narcolepsy, me/cfs and eds, my life isn’t necessarily going to be cut short. I’m still capable of living a semi-normal life. People with ALS, cancer, aids etc generally aren’t so lucky. So I’m all for giving them a voice and supporting their campaigns in order to give them a better chance.

Meanwhile I’ll continue educating my friends, family and colleagues about my illnesses and I’ll be more than happy with that. I don’t want sympathy, I don’t want to ask for anything. All I want is for the people around me to know what I and many others live with. I want to help those who are newly diagnosed come to grips with what they’ll face. I want to show that just because I’m not ‘healthy’, I can still live and still achieve my goals.

So for all the ice bucket haters out there, take a step back and open your eyes. Educate yourself and be thankful that you don’t have to live with the fear that ALS can bring.


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