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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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4 comments

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,
-Q

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.