ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS South Australia Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Advocating for invisAbilities
Sunday 15 January 2012
Advocating for invisAbilities
Ethan Yang discovers how we can accommodate people with "invisible" chronic illnesses
Whoever created the idiom “never judge a book by its cover” probably didn’t realize the truth it carries for those suffering from what are known as “Invisible Disabilities”. The illnesses classified under this umbrella are of enormous range, and include cancer, chronic fatigue syndrome, migraines, fibromyalgia, irritable bowel syndrome, arthritis, Crohn’s disease, connective tissue disorder, and diabetes – among others.
Now known as Invisible Chronic Illnesses (ICI) and informally as “InvisAbilities,” these illnesses share the following characteristics: invisible, chronic, and not yet curable. Most include pain and fatigue that are both clinically hard to define and to diagnose, and can be misconstrued as normal pain. To make things more complicated, many who have ICI have multiple disorders that are difficult to treat.
The term was brought into wide use in 1997 by the Invisible Disabilities Association (formerly The Invisible Disabilities Advocate) following a 1994-95 US Survey of Income and Program Participation that revealed 74 per cent of those living with “a severe disability do not use such devices [such as a cane, crutches, or walker].”
Since then, in the words of the Invisible Disabilities Association (IDA), efforts have been made to raise awareness for “listening with our ears, instead of judging with our eyes,” as those who appear “able” may actually be “unable.” Efforts have also been made to provide aid to people with both visible and invisible disabilities. Ricky Buchanan, an Australian woman with multiple invisible disabilities, began many projects that brought together those suffering from similar symptoms and enabled them to voice their feelings. In one of her blogs, called Not Done Living, she writes an open letter “To Those Without Invisible Disability or Chronic Illness,” reiterating the need to understand before attempting to help.
The Invisible Disabilities Association offers awards for those promoting the education of invisible disabilities. Scholars, mostly psychologists, have written about these dysfunctions as invisible chronic illnesses. This awareness movement, however, has remained mostly in the United States, relating to the middle-aged and the elderly. According to Alexandra Tighe, the founder of the McGill club InvisAbilities, a chapter of the same club of at Queen’s that aims to raise awareness about invisible physical medical conditions, this stigma has yet to be changed; people still adhere strongly to the notion that youths our age are “too young to look sick.”
Tighe, a U1 psychology major, suffers from a complicated connective tissue disorder that was so specific that it she found it easier to tell her friends that she simply had “knee problems.” She even kept it a secret from her best friend until after they came to McGill last year and roomed together. Even then, Alexandra recalled holding back from explaining the situation to Erin until a few months later. During an interview with The Daily, Alexandra expressed that while she looked normal, she really needed help with medication.
Invisabilities are often genetic; multiple studies have proven that chronic fatigue syndrome, asthma, and even migraines all have genetic basis. In this circumstance, DNA analysis can aid the proper diagnoses. For those whose disabilities are not genetic, most doctors will wait an average of four years before diagnosing patients as “chronically ill.” That would be equivalent to living through your entire college life between pain and fatigue and the supposed “prime time of health.”
As Tighe states, “We all have a distorted image of how a person with disability should look. We’ve all gone through the situation when someone just takes the elevator one floor and thinks to ourselves, ‘Gosh! Why can’t this person just take the stairs?’ But this person might have arthritis or asthma. People may need help for a real reason.”
In fact, even accommodations for these sufferers are invisible. Though McGill’s Office of Students with Disabilities does accommodate those with “invisAbilities,” there is no clear social construct set to acknowledge their existence. It’s not that advocates for people with InvisAbilities are demanding elevators specially catered to the “InvisAbles,” but, as Tighe says, they are calling “[to] reconstruct our image of what a disability is and remind ourselves that maybe something is going on.”
The reason for coining the term Invisible Chronic Illnesses, according to Tighe, is to create a community that can bring together those suffering from the same societal challenges. Some of these diseases are so rare that no one would care to take notice and provide adequate support to these sufferers. Grouped together, these people will gain access to resources and be empowered to voice their concerns as any other diseases.
Julie Harmgardt began InvisAbilities at Queen’s University four years ago, striving to raise awareness in Canada. Since then, it has gained momentum; in 2010 she began a national association known as InvisAbilities Canada. Tighe sought to realize her vision through the founding of McGill’s chapter last semester, as a place for those with invisAbilities to discuss.
Many members, however, don’t have ICIs. Erin Carrieres, a U1 Psychology Major and Alexandra’s best friend, joined the club because she wants to help out. Laurie Raymond, a psychology exchange student from University of Edinburgh also joined the club, because she believes in the cause, and wants to increase awareness. Ben Black, a Computer Science major from Carleton University, also came to help out on a visit to Montreal.
The club held a bake sale at the Burnside basement in November with a poster detailing the definition and purpose of “invisAbilities.” I sat in the bakesale, and it was shocking to note that many passersby simply gaped, expressing the sentiment: “I never knew that.”
There is also a Facebook page and a newly created website detailing the ideals and aspirations of the club – at the very least, compassion and understanding for the continuous physical excursion people with invisAbilities live by.
“You never forget,” Alexandra says. “It’s an issue that you have to deal with for the rest of your life.”
The above, with comments, originally appeared here.
blog comments powered by Disqus