A 61-year-old former Calgary drama teacher, Ron Cole has battled crushing exhaustion since 1995, which often leaveshim unable to get out of bed. The effectswere initially so powerful they wipedout his ability to read—a humblingexperience for someone with an Englishdegree.
While on some days he now cansummon the energy for a walk, hissocial life has never recovered. Most ofhis friends from his teaching days aregone for good, and he doesn’t reallyblame them. They simply got tired ofhim not showing up to their parties,and turning down their invitations toget together.
Cole is one of tens of thousandsof Albertans with a chronic diseasewho suffer from stigmas surroundingtheir conditions. Because theirdiseases are not always visible, andoften misunderstood, people oftenmake erroneous assumptions that areendlessly frustrating and hurtful. ForCole, it’s the pervasive suspicion thathe’s exaggerating or faking.
Even health-care professionals canbe a problem. Dentists have refusedto treat Cole because he missesappointments, or because he can’tlie back in a chair without a surge ofnausea. Some physicians get upsetwhen Cole doesn't show up. He wants tokeep his appointments, he really does.
It's just he can’t always summon theenergy to move. And he really wishesmore people could understand.
“They just think you're malingering,”Cole says.
Such attitudes are a new experience toShelley MacEachern of Grande Cache,Alberta, who for 30 years has lived withtype 1 diabetes. She was recently turneddown for a job she had trained fourmonths to take on because her potentialboss was worried about her beinginsulin dependent.
But MacEachern, 36, lives a virtuallynormal life with her five daily doses ofinsulin: morning, evening and beforeeach of her three daily meals. If shesticks to that schedule, she can dovirtually anything anyone else can do.
However, she says her would-be bosswas worried she’d pass out suddenly,and other staff members would have tohelp her. She says he was also upset shemight not be able to work night shifts—something her doctor said would havebeen possible with good planning.
Such accommodation was notconsidered, she says, because thepotential employers didn't understandher condition and leapt to a judgment.They refused to learn about diabetesand rejected her out of hand.
“They could have talked to me asa person instead of generalizing, butthey didn’t,” says MacEachern, whoadds she’s never passed out in the
Reducing the stigma ofchronic illnesses
You can reduce the stigma of chronicillness by:
•;Considering the person, not merely the
symptoms and effects of their illness
•;If someone has physical disabilities, focus
on what they can do rather than what
they can’t do
•;Asking someone with a chronic condition
if they can help you gain a better
understanding of their illness
•;Making informed decisions rather than
snap judgments. In today’s age of instant
information, it’s easy to find facts and
evidence about how chronic illnesses
affect those living with them
•;Being patient. For people living with
chronic illnesses, health becomes a big
(and often time-consuming) priority,
sometimes making it harder to make and
maintain friendships and relationships
•;Sharing your knowledge. As you learn
more about a chronic illness, you can
help correct the misconceptions others
may have about it
•;Becoming a champion. When you lend
your support to groups and organizations
that represent people with chronic
illnesses, you’re contributing to efforts to
change attitudes—and to find treatments
Because Ron Cole’s chronic conditionis not always visible, and oftenmisunderstood, people often makeerroneous assumptions that areendlessly frustrating and hurtful.