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When my GP at the time gave me the fibromyalgia diagnosis, he asked about my quality of life. I did not know what the phrase meant then. Even though I’ve seen more people use it as I’ve read about the experiences of people with disabilities, I am still not sure what the phrase means.  Perhaps someone else could explain this to me.

Does quitting my job lower my quality of life?  Some people would say it does. The state of Indiana Family and Social Services Administration seems to think that I’m still an able-bodied adult.  I can forgive them for this since they do not have my current medical records. Staying on the job and the stress that came over worrying about being fired would also fall under this broad category. Perhaps the promoters of this phrase are talking about something else.

Is my quality of life lower because there are days when I must rest because of pain or fatigue?  I’m not bedridden, unlike some other fibromyalgia patients. Even if I were, not everyone needs or wants a great deal of social interaction. Some people would be completely content alone in a library at the end of the world, and I would be content to live in such a world even if I broke my glasses. It seems that we must look elsewhere to find the phrase’s meaning.

Is my quality of life lower because I no longer do some of the things I used to do? True, I don’t do some of the things now that I would enjoy doing. As we mature, however, we stop doing many things we once enjoyed doing.  All it means is that things have changed. I still enjoy playing with building toys, such as Legos and Erector sets, but I no longer play with these toys unless a younger relative is involved.  It’d be fun to break out the Legos and build things with them, but other adults would look at me strangely. Yet another exploration of the meaning of the phrase falls apart.

Maybe people think my quality of life is lower because I use a cane.  I’ve seen the occasional look of pity I get from older people. I have also heard phrases like, “Isn’t getting older fun?” Plenty of people use canes and seem to be content with their lives.  A cane is simply a tool.  It supports a painful limb, and it prevents the falls that occur because of dizziness or muscle weakness.

I can make guesses about what people mean all day. The phrase bugs me.  People seem to use this phrase when they want to make a comparison based on their lives.  The context suggests that there is threshold. If a person falls below this threshold, then their life is not worth living. I do not live anyone else’s life.  I can only say I am willing to continue this life.  If a doctor is really concerned about my quality of life, they can give me a portion of their income.  Supplementing my income with additional money would do more to improve the quality of my life than asking me silly questions or prescribing prescription drugs ever could. 

Date: 2015-05-25 08:48 pm (UTC)
silk_dragon_zen: Rainbow Autistic Pride lemniscate over the black, grey, white, and purple stripes of the Asexuality Pride flag (Default)
From: [personal profile] silk_dragon_zen
Beautifully said! I couldn't agree more. Yes, there are things that sociologists and psychologists have found that generally increase ones happiness — e.g.: having a certain baseline of money (but not more than that), accepting the things you can't change (learning to stop struggling against them), and having something that currently interests you to occupy at least some of your time, among many other things — but I think it's generally agreed that it depends on the person what “quality of life” means.

Date: 2015-05-25 11:55 pm (UTC)
silk_dragon_zen: Rainbow Autistic Pride lemniscate over the black, grey, white, and purple stripes of the Asexuality Pride flag (Default)
From: [personal profile] silk_dragon_zen
Yes, that's one of my concerns with the misuse of the concept of quality of life. I have no problem applying it to my own life, but it's never for me to say what is a good or even adequate quality of life for someone else. Same goes for happiness: no one ought to be required to be able to truthfully say they are happy to be granted the privilege of life. I know many unhappy people who would still prefer to live in hopes of one day finding happiness (pursuit of happiness) than to die.

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