Saturday, June 21, 2014

Why those with treatable diseases get more sympathy

The psychologist Melvin Lerner talked about the "just world hypothesis" – the idea that we hate injustice so much that, if someone seems to be undergoing an unfair punishment, we start inventing crimes to fit it.
... If someone's story is too bad, and too hopeless, we find it hard to sympathise. It just seems to demand too much.
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I periodically point out that those with cancer -- some forms of which now have a nearly 100% cure rate -- are still treated as if it's an automatic death sentence, but PWCs, with a zero percent cure rate, are treated like lazy mooches when, in fact, it is damn near impossible for us to get disability benefits in a timely manner, charitable assistance, or volunteers to clean houses or drive us to doctor appointments.  All the things cancer patients take for granted, we can't get at all.
That I wish I had cancer instead of CFS brings out the verbal abuse.  Frankly, my odds of going back to work would be better.  There are things doctors can do for cancer.  And, yes, I have a lot of cancer patients in my family, so I know how the two compare.  My dad got 20 good years after his surgery and died at the ripe old age of 86.  I have a life expectancy of 58, and have spent most of the past 20 years homebound.
A friend had successful cancer treatment a year ago.  Even though she had a husband and sisters available to take care of her, the whole neighborhood pitched in to bring casseroles and do yardwork.  I have no husband or sisters to help out, and only once has a neighbor brought me a plate of food ... leftovers from a party, and I had to turn it down because of my food allergies.  And instead of doing a little yardwork for me, the neighbors call and report me to the authorities when my hired help doesn't do the job well enough.  Instead of help, I get threatened with sizeable fines. 
No charity has ever sent a volunteer -- even when I was going to church regularly, not one person from the church offered any assistance.  Nor have I received any money or other tangible goods from any charity.  Every place I called informed me that I don't have the right diagnosis, and therefore I should call the charity affiliated with my disease.  What do I mean they don't have an office here?  This is a major city.  What do I mean they don't even have an office in the state?  What do I mean they don't provide anything directly to the patients, all they do is raise money for research?!?!?
All of this is just too foreign from the usual disease concept for anyone to get their heads around.  If my disease charity isn't sending volunteers, people convince themselves that it's because I don't need any help, not because the disease isn't respected enough to attract volunteers.

1 comment:

Sally Burch said...

Well said!! My husband told me the other day that quite probably loosing a leg would have impacted my life less than this!!

I've been lucky to have the family help I need and to have been treated with respect by friends (okay one exception...) but many are not so fortunate.

It's the looking normal thing, the myth of the "tired" problem as if it were the main dilemma of ME.

Yet if I'd lost a limb, by this stage, I'd have healed, have a prosthesis and be actively involved in my life again.

Instead I have to curtail everything to a snail's pace interspersed with rests. A life on hold.

Hoping you get more support in the future and that - for all of our sakes - public understanding of ME increases dramatically as new research findings come in.

((Hugs)) xx