The ABCs of Disability – The Letter “Q”

(Quality of Life Factors

Image from The Association of the British Pharmaceutical Industry)

Q.

As in “Quality of life”.

This is what the ENT said to me at my last appointment.  To recap, he said he didn’t know why I have balance problems and problems with my ear.  He added that this problem happens to more people than what people realize but, unfortunately, there was nothing more he could do for me.

Then he uttered that one sentence.  That one suggestion of how to cope.  How to deal with what I’ve been dealt.

The one that basically sums up my life sentence for having an invisible chronic illness.

“Try and find a quality of life.”

I asked a couple of questions but really, that was the end of the appointment and his ability to help me.  He was very kind and professional in the way he was telling me all of this but, this is what I took away from it.

As an ENT, he can’t tell me what is causing all of this or cure it, and basically I’m fucked and find a way to deal with it all.

And, there you have it.  I get a specialist finally giving me the acknowledgement and a medical diagnosis of what I always knew – that there was something physically wrong with me – but there really isn’t much that can help me.

Welcome to the chronic illness community and finding a quality of life!

So what, you may ask, is “quality of life”?  According to Natural Resources Canada, the following is their definition.

‘Quality of life’ is a term used to measure well-being. Well-being describes how well people feel about their environment, and collectively these feelings can be thought of as quality of life. To assess quality of life, indicators are used to represent the most important aspects of a person’s life (called domains), which include, for example, housing, education, employment and household finances. Indicators are used to measure complex phenomena (such as quality of life) and can only provide us with an indication of the actual quality of life.

But how does the medical community try to reconcile “quality of life” with their patients?

Here’s a link to The Association of the British Pharmaceutical Industry who held a conference in 2001 with The Long-Term Medical Conditions Alliance in 2001 about quality of life and health care decisions and where such things as how to measure quality of life, quality of life and clinical trials and involving patients in determining their quality of life were discussed.

While there are many concerns that are shared by people dealing with chronic illness, ultimately everyone’s definition of  quality of life is dependent on a variety of factors that are uniquely their own.  What kind of illness do you have?  Are you in pain a lot or a little? How’s your stress level?  Are you able to work?  How have you been sleeping lately?  Did you and your significant other have a fight?  Do you have a significant other?  Can you safely get around?  Are you housebound?  Do you have to live in a care home?  Do you have support from others? How independent have you been able to stay? How much care from your doctors are you able to get?  Do you even have a diagnosis yet?

Having a chronic illness is life-altering for many people.  You have to acknowledge what you have and what your limitations are, or may be, and go from there.  It’s a completely new and overwhelming experience that we wouldn’t wish on anyone.  We are all learning as we go along and it’s definitely a live and learn experience.

There are many phrases that are uttered without much thought, that are throw-away phrases of a conversation.  “Live and learn” can be one of those phrases.

But, ask a person living with a chronic illness and you’ll find out that learning how to find a quality of life truly is a live and learn experience for us all.

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3 comments

  1. I found your blog via your comments at Mo Is Blogging . . . I Think.
    I would love to borrow the idea of the abcs of disability, putting my spin on it: the abcs of chronic pain/illness.
    I will link back to your blog; I’m working my way backwards through your abcs and other postings.
    I’d also like to add your blog to my blogroll (which seriously needs updating) if you are okay with that.
    http://phylor.wordpress.com

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