Monday, August 2, 2010

Selena Writes: I Am Not My Chronic Illnesses

The location of the nine paired tender points ...Image via Wikipedia
I recently read an excellent blog post over at The Queen of Optimism entitled Want to empower? Learn what “People First” means.

When I got done reading this post I said to myself, 'Wow, I didn't know what "People First" meant!"  But upon further reflection, I recognized the I have been using this language for at least 18 years ... I just didn't know it was called "People First" language.

Want me to prove it to you?

In my post A Story in 140s: Persons Living with Fibromyalgia (PWFs) I used "People First" language.

Since this realization, I have been thinking about all the ways that I refer to myself in relation to all my chronic illnesses and all the "nicknames" people use to refer to themselves and others living with specific chronic illnesses. I wrote some of these labels and nicknames down:

You might call me a... But if I am a person first, you'd say...
Cancer survivor I am a person who had cancer.
Diabetic I am a person who lives with diabetes.
HepCat I am a person who lives with Hepatitis C.
Fibromite I am a person who lives with fibromyalgia.
POTSy I am a person who lives with dysautonomia.
Spoonie, ChronicBabe I am a person who lives with chronic illness.

So do you see the difference?

The Queen said it best:
"Defining a person primarily by a disorder they have and using dated terminology that is condescending limits a persons’ other characteristics and does the opposite of empower. It puts people in a corner figuratively and some times literally. It implies we are not equal. It’s limiting language. Every person, with or without a disability, is a person first and foremost so call them a person with…”
That's right! I am not cancer, diabetes, Hepatitis C, fibromyalgia, dysautonomia or chronic illness. My illnesses are not me.

My illness experiences are just that, experiences. They are not what I think, what I feel and what I do. They are not who I am. I am Selena first, living a life with chronic illness second.

Love them? Hate them? Just don't care? What do you think about illness nicknames? Click the Add Your Comment button and speak you mind...

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Jamee said...

Love your post! I think it is so very important to see people as people not their illnesses or race or religious preference (and the list goes on). Such a wonderful resource. I constantly remind myself that I may have a disease but that doesn't mean that my disease has to have me.

Heather said...

I agree, we are not our illnesses. I am just a woman who happens to have Fibro, Arthritis, Asthma, IBS, and headaches. They don't make me, I make me!!!!!

Queen of Optimism said...

I'm so glad you wrote this! It's such a thoughtful post about such an important subject. I especially love your language choice comparisons!! So glad we connected and thanks so much for the kind words. I'm honored! Take good care of yourself.

With lots of caring thoughts,

Anonymous said...

I like the idea of people first language. I think of myself as chronic pain survivor because the word survivor gives me strenght. Thanks for setting up the comparison table and showing how strong words can be.