Monday, September 8, 2008

national invisible illness awareness week

Those of us with Migraines certainly understand the frustrations of living with an invisible chronic illness, one that brings us incredibly debilitating pain and other symptoms. Many of these frustrations we share with other members of the invisible illness community, specifically that Migraines are invisible, and those around us can't tell we're sick just by looking at us. Hence the word, invisible.

You may have noticed in reading my blog that I capitalize the words Migraine and Migraineur. I adopted this for many of the same reasons as my fellow Migraineur bloggers: advocacy and awareness of Migraine as a disease, and more than just a bad headache. Teri Robert of MyMigraineConnection explains her reasoning for the capital "M" in her excellent blog post, Migraine With a Capital "M".

Ellen Schnakenberg over at WEGO Health has recently run into trouble with the WEGO editors. Per AP style guidelines, diseases are not capitalized unless they are named after a person (Parkinsons, for example). Because WEGO follows AP style, they will not allow Ellen to capitalize Migraine in the WEGO newsletters. After some pressure, they have allowed her to capitalize Migraine in her own blog posts and articles. Teri Robert fought a similar battle with before she moved over to MMC.

This may not seem like a big deal. Follow the style guidelines and stop making a fuss about it already! But for those of us living with Migraine, recognition of our disease as what it is - neurological in basis with a genetic component, and incurable - is crucial. Public perception of Migraine is that it's just "a bad headache". How many of us have heard and been hurt by those insensitive comments? Can't you just take some Advil? You always have a headache. I used to suffer from headaches too, until I found ___ cure. Sound familiar?

Clearly I do not follow AP guidelines on my blog when it comes to this issue. And from now on, instead of capitalizing just Migraine, I will be capitalizing the names of all diseases - Arthritis, Multiple Sclerosis, Epilepsy, Lupus, all of them. Those of us with invisible illnesses not named after a person shouldn't have to be reduced to a lowercase letter, especially when these illnesses have such a large impact on our lives.

In the spirit of National Invisible Illness Awareness Week (September 8-14), I ask all of my readers to consider doing just one thing to raise awareness. That could be as simple as talking to your significant other about the details of your illness that you normally try to hide. It could be writing a blog post or a letter to a friend. It could be capitalizing the name of your illness, or all illnesses. It could be any of these things or others, whatever may be your personal comfort level.

For further reading about II Week, I encourage you to visit the II website and see what other bloggers are doing. If you have any ideas about raising awareness, I would love to hear them in the comments.

Find more videos like this on Illness-Disability-Healthcare-Caregiver Ministry Network

Be well,


Leslie said...

Hi MJ,

You know I love this topic, so I think this post is great. Capitalization of my own illnesses is something I struggle with, not pertaining to any specific writing style, but with my own. I'm planning a post (at some point) on chronic illness abbreviations. Hope you have a good week!


Megan Oltman said...

MJ - Great post! I like the idea of capitalizing all the illnesses! I approve of style guidelines generally, but I also think language is our most powerful awareness tool and rules are made to be broken, especially to make a point! Good luck with the Botox today!

Dr. Carley Clan/ Migraine Community said...

Hi Mj,
This is Liz over at Migraine Community! I am really...hmmm..not happy about this. I understand MLA format and APA. But lets face it, as we blog..lets put it this way, it is not to win awards on our writing style. We are hear to inform, help, and sometimes just have to purge our feelings out!
I am on the same page with Megan, RULES ARE MADE TO BE BROKEN!!!
Hope you are having a pain free day!

Parin Stormlaughter said...

Good article!

And like you, I wonder why not capitalize all illnesses? They all impact somebody right?