Through blogs and comments, patients and experts explore what it takes to find good health care and make the most of it.

Accommodations for Chronic Conditions


Patient Perspectives roundup recent post from patient blogs and are part of the Center for Advancing Health's portfolio of free, evidence-based coverage of what it takes to find good care and make the most of it.'  Written by Monica Kriete, CFAH Communications Associate, and Goldie Pyka, CFAH Communications Manager.

While the Americans with Disabilities Act, Equal Employment Opportunities Act, and similar legislation outside the USA are meant to protect people with disabilities from discrimination, the language can be confusing, leaving patients to wonder: "Is what I'm experiencing really discrimination?" and "What is a reasonable accommodation?"

Here to help is Kriss Halpern, a lawyer who offers advice on what is and isn't legal for an employer to ask.'  He should know'he's managed a career and diabetes since college.'  Though having diabetes can influence one's career choices (and in the past some jobs simply may not have been feasible), a combination of technological advances and determined creativity have made it possible for diabetics to do most jobs.

But what happens when the symptoms of your illness are invisible to those around you?'  Kelly Young has experienced the discrimination that occurs from the illusion of appearing well ' the effects of her rheumatoid arthritis aren't visible to others.'  "I couldn't hold an iron or a soap bottle any more ' and at times even a cup of coffee.'  Even if I asked them not to, people handed me heavy things and looked incredulous if I said I can't hold that.'  It's just hard for the mind to overcome what their eyes see.'' 

Lene Andersen of The Seated View uses a wheelchair due to limited mobility from lifelong rheumatoid arthritis.'  Recently, when trying to purchase a new outfit with a debit card, the store's PIN pad couldn't reach her in her wheelchair.'  How was she to enter her PIN number?'  After a number of failed work-arounds, Lene had to put her items on hold and leave.'  Frustrated and humiliated, she writes, 'Claiming that it was a mistake or a goof or that they 'just didn't think' about accessibility for people with disabilities is not an excuse.'  Not in this day and age where said people with disabilities are independent, contributing members of the community."

Taking a different perspective is Sandra Beasley on accommodating what seems to be a growing cacophony of food allergies. ' ' Sandra herself has multiple severe allergies, but she wonders if we've "gone too far in trying to create a bubble around those of us with food allergies."'  From classrooms to baseball games, she says, "Manipulating shared adult environments with bans and 'free' zones does not help those with allergies learn to fend for themselves in the real world'There will be mistakes. There will be both allergic reactions and reactions avoided. These moments'will be scary, exhilarating, precarious'and essential'Dodging death is a daily mission for those of us with food allergies."

What do you think'do accommodations go too far or not far enough? ' Is more legislation the answer?

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Patient Perspectives round up recent posts from patient blogs and are part of the Center for Advancing Health’s portfolio of free, evidence-based coverage of what it takes to find good care and make the most of it.

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Lene Andersen says
August 11, 2011 at 1:08 PM

Thanks so much for including my post in this blog!

Dear Healthcare Facility: We Love This But We Hate That | Can we laugh now? | Rheumatoid Arthritis Warrior says
October 21, 2011 at 6:03 AM

[...] RA Warrior was quoted in this Prepared Patient Forum piece â??Accommodations for Chronic Conditions.â?? [...]