Why Other Patients Should Support the Ice Bucket Challenge

Why Other Patients Should Support the Ice Bucket Challenge copy

It’s all over social media. The gasps, the cries, the shrills, and the challenges have taken over our Facebook newsfeed. For weeks we have watched person after person, celebrity after celebrity, even children and animals participate in the Ice Bucket Challenge. We have heard more about ALS in the last month than we had in our entire lifetime. Some people have even searched to find out why they’re pouring water over their heads.

Ice Bucket Challenge

The ALS Association has raised over $88.5 million dollars (so far) compared to the $2.6 million dollars they raised in the same time period last year. People are talking. People are researching. People are learning.

And, of course, we have the critics. We have the people who think the whole idea is stupid. We have patients with other diseases, such as lupus, that talk negatively about the challenge. Jealousy oozing out of both sides of their mouth. We have whispers (because who would want to be the anti-philanthropist) about how the challenge should be for this disease or this cause instead.

To them I say, “You are wrong.”

I’m going to be straight forward with all of you. I’m not doing the Ice Bucket Challenge. I’m not pouring cold ice water over my head. I live in Chicago and all I have to do is wait a few more months and I can just step outside for the freezing cold. I’m not going to have my children do it because I don’t want them to participate in challenges “because their friends did it.” Even if it is for a good cause. My inaction doesn’t mean I think it is wrong or that I am jealous as a lupus patient that there are people who are participating. No, it means that in this instance, I prefer to learn, teach, and support.

And that’s ok.

All around Facebook I have seen memes talking about the challenge. Some of these challenges are funny.

What could go wrong?? ice-bucket-challenge-memes

Some are stupid.

Ice Bucket Challenge. Did you die? Ice Bucket Challenge


And some make me angry.

Ice Bucket Challenge Insult

Let me be clear. I’m not upset that there is awareness being brought to the clean water issue. I am, however, upset that they are insulting awareness about a disease because they don’t think there are enough people dying from that disease. Why is it acceptable to insult something that is being done for a good cause? Why is it fair to minimize a disease because the amount of people suffering from it is fewer than those suffering from another cause or disease? Why is it important to downplay something that is a guaranteed death sentence because it is not a death sentence that someone else is facing?

Yes, we’ve been inundated with video after video and challenge after challenge, but if your mom, brother, best friend or you were diagnosed with the disease do you think you would think this is stupid? Would you want them to see the meme above?

Take it to another level for me. Let’s say you have ALS. You understand what it means long term. That someday you won’t be able to lift a fork to your mouth. That someday you won’t be able to walk without help. That someday your mind will be functioning perfectly, but your body…well….your body has failed and all you are left with is a body only capable of laying in a bed while you’re fully aware that with time you will die.

Do you feel scared? Alone? Devastated?

Suddenly when people start doing something as simple and seemingly stupid as dumping a bucket of ice on their heads you’re excited because for the first time in your time with ALS people actually know a little bit about the disease. People aren’t just nodding with feigned understanding when you tell them you have ALS. For the first time since your dismal diagnosis you feel support and hope. Awareness is happening and you’ve been lucky enough to see a big movement in ALS awareness.

We should support that. We should support awareness and help towards any disease. We should support education and fundraising for all diseases. Even if it is something we know nothing about. Other patients should support the Ice Bucket Challenge because we understand what it’s like to have no one know about our disease. It’s called empathy, people.

October is Breast Cancer Awareness Month. We will be surrounded by pink ribbons, pink on NFL football players, and advertisements promoting walks and awareness. Buildings will be lit up with pink lights and businesses will have special fundraising opportunities. Many people say we don’t need to do the breast cancer awareness campaigns as much because the death rates have fallen. Of course they’ve fallen. They’ve fallen because of the awareness, fundraising, and pink explosion in the early nineties. Since 1990 the death rate for women diagnosed with breast cancer has decreased by 34%!! That means that thirty-four more women out of a hundred diagnosed with breast cancer will live. Thirty-four more women will see their children grow. Thirty-four more women will survive.

And why is that?

Studies have shown that there is “evidence that [National Breast Cancer Awareness Month] events were effective at increasing November diagnosis rates during the mid-1990s when the awareness movement was expanding rapidly.” In the twenty years since the initial push, more money has continued to be raised, more funds go to research, more awareness continues to happen.

Most importantly, more women get to live.

In twenty years, we can only hope that the death rate for ALS has fallen this substantially. We can only hope more children get to have their parents live a long life after an ALS diagnosis. We can only hope that progress is made in research about ALS.

Until then, pour some ice cold water over your head and support someone whose struggle you know nothing about.

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  1. Very well said – agree with every word here!
    Raising awareness is just as important as raising money.

  2. Great post. I totally agree. I don’t know how anyone could be annoyed with something that is doing so much. good.

  3. I agree! I think ice-bucket challenge is wonderful! At the same time I’m very concient what a huge problem there is about clean water around the world. But this is such an amazing way to raise awareness. Like you said, there needs to be a challenge for every disease and also for clean water situation around the world. There should be a challenge for hunger and malaria. And for lack of education!

  4. I’m glad more awareness and funds are being raised for this cause!

  5. It’s so interesting how the Ice Bucket Challenge has been so controversial in a way. Yes, great for awareness and all the money that it has brought in, but also all the backlash and instances of people doing it just to follow a “trend”. I hope it will eventually also bring people to opening up to all the other charities that need equal support!

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