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
