Students Cope with Invisible Illnesses
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Joined: 25 Aug 2013
Age: 67
Gender: Male
Posts: 36,122
Location: Long Island, New York
Sporting her bedazzled cane — black with sparkly rhinestones — Benham shows she is not ashamed of her connective tissue disorder. But she is quick to point out that not all disabilities are treated equally.
“When I’m using a cane, people are quick to offer me a seat at the front of the bus, or they apologize if there isn’t a ramp to where I need to go,” Benham said. “When it comes to anxiety and autism, people tend to be less understanding. They don’t realize that offering the support I need because of those experiences is similar to providing a ramp.”
Living with illness and disability can be especially challenging when it is “invisible.” And because illnesses are not always perceived by onlookers, they are often undermined and misunderstood.
Benham, a doctoral student and graduate teaching fellow at Pitt, and an organizer at the Pittsburgh Center for Autistic Advocacy, has multiple disabilities — autism, panic disorder and a connective tissue disorder. Benham said she sometimes experiences a disconnect with others in daily interactions because of her disabilities.
Brett Cooksey — a Pitt graduate student in the master of social work program — said he sometimes faces a similar disconnect even with people who know he has autism.
“They do not see me at home spinning in circles or repeating phrases over and over, and I feel like because they do not see me as visibly disabled they will just assume that I am feeling perfectly fine on the inside,” Cooksey said.
For those with disabilities, Pitt’s Disability Resources and Services has numerous accommodations available to students — including extended time on exams, text-to-speech software, a Disability Shuttle and single rooms in residence halls.
Benham said her department at Pitt is supportive and understanding, but Cooksey said many other people are not.
“I think it is unreasonable to expect someone with a disability — invisible or not — to always be comfortable or willing to educate others when they are often already struggling as is,” Cooksey said.
When constantly faced with misunderstanding, Benham said it is important to remember self-worth.
“How I negotiate that [misunderstanding] in a world that’s not always friendly to me is to remember that the reactions of the people to me do not define my value — that my value is in that I’m human, just like everybody else,” Benham said.
I have very similar experiences as Jessica as far how people treat my visable disabilities vs my Autism
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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
I've been diagnosed with some invisible illnesses, like neurological and psychiatric conditions. Whether it's a condition like Asperger's, ADHD, an emotional disorder like depression, or something like dysautonomia, you're at a disadvantage b/c people can't see it. Like with me: people see a young, apparently healthy woman (who also looks younger than her age) and they assume I can live a "typical" life of someone my age. They tell me to get used to my pain and struggling b/c "it'll get worse when you're older!". They have not the slightest idea. They don't know how unstable my heart rate and blood pressure are, or how many medications I take every day at the age of 24. It gets hard to stand up and walk, let alone DO much of anything productive.
People just don't seem to *get* it that an illness/disability/difference that isn't outwardly visible can still be just as disabling as one that is. What I hate is when someone doesn't listen to you about what the disorder actually is. Like, dysautonomia can look A LOT like anxiety, and they can be comorbid, but people often just assume that I'm panicking and tell me to calm down (which obviously isn't helpful during a panic attack anyway). I HAVE anxiety and dysautonomia, but I can tell the difference generally, so I get mad when people assume that it's "just anxiety". I think I am more qualified to relate what is going on subjectively in my own body than they are!
Developmental and psychiatric conditions are so difficult because of the stigma surrounding mental illness and mental health treatment, of course in part because you can't outwardly see them and a lot of people seem to have this dualistic "mind over matter" attitude about mental problems in particular. I am personally so interested in psychology and mental health in part because of my own direct experience with mental illness. I really want to raise awareness for mental health issues and other invisible disabilities in general like dysautonomia and Ehler's Danlos Syndrome. It's really important to me.
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AQ:33
Dx'd w/ depression, OCD, ADHD, generalized anxiety
provisional Dx of mild ASD
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