Tuesday, July 22, 2008

Using the words "headache" and "Migraine" Interchangeably. Bad, Bad, Bad.

I find myself exceedingly sad today. Last week, I received an email from a PR firm representing one of our major headache and Migraine disease nonprofit organizations. The email asked me to share information from a recent survey done by the nonprofit organization.

My mood went up at first -- Yes! More good information to share. Then my mood plummeted as I continued. What? This MAJOR organization, whose members and staff should know better, used the term "headache" through their entire release. Then, they added a paragraph about Migraine at the end. No way could I promote the information from their survey. There was no way to tell how many of the survey participants were responding based on their headaches and how many were responding based on Migraines.

I responded to the PR firm email, expressing my concerns and saying I could not promote the survey and its results. The next day, I received an email from the director of the nonprofit. In part, it read...

...The (name of nonprofit removed) uses the terms interchangeably as often those who have migraine often don't use that specific term for their headache. Sick headache and stress headache are frequently used to describe migraine. Many migraineurs think that if they don't have nausea/vomiting and/or sensitivity to light/sound, they don't have migraine, when they actually do. These people may still take time to read the information the (name of nonprofit removed) provides when the more generic term of headache is used...

What? I can't believe this was said. This organization should be educating people, not feeding the lack of knowledge and understanding. Maybe they don't think it's worth the effort to teach people?

I looked back at the material that was sent to me. It could easily have been rewritten to be enlightening rather than pandering to unawareness. All it would have taken would have been to replace the word "headache" with the phrase "headache and Migraine." It would be nothing to start adding a paragraph to their releases that explains that people are mistaking Migraines for headaches.

It just seems to me that this director is talking in circles in the email to me. It seems that this person is saying it's better to pander to ignorance rather than promoting education and awareness.

I'm not going to name the organization. It's just not worth it to start a battle with a director who is so sure that their organization is right.

Allow me to close with the last sentence of the reply I sent to this director:

If we can't count on the leaders in the field to push for progress, on whom can we count?

Sadly,
Abi

6 comments:

Eileen said...

Rock on girl!

I am so proud of you for responding to said nonprofit. I am 1000% behind you!

Migraine is NOT a bad headache!!!

You would think said nonprofit would want to educate and use the correct language.

It really is very sad.

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Megan Oltman said...

I'm with you, Abi! It is sad. If they do have an audience and are not using the opportunity to educate people, they are leaving people in an ignorance which could endanger them. It's downright irresponsible!

- Megan

Migraine Chick said...

I totally agree with "Migraine is NOT a bad headache." Thanks for standing up for us Migraine Peeps!

Debbie said...

Abi,
I was referred to this post by Arabella from Migraine Truth. I am sad to hear that such a well-known organization cannot or will not differentiate between Migraine and headache. It is understandable, but not acceptable, because Migraine is classified as a headache disorder and because head pain is a characteristic of both. Thanks for the post. Such unnamed not-for-profit will no longer be listed on my "recommended Migraine sites"

Abigail said...

Debbie,

Yes, it's SO sad. The email conversation I had with their executive director was even more sad. :-(

Aren't these the organizations who are supposed to set an example for the rest of the world? If so, we're in a world of hurt!

Namaste,
Abi