Home Health How to support a student that has an invisible illness
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How to support a student that has an invisible illness

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How to support a student that has an invisible illness

When I was in drama school I didn’t know I had a disability. I had chronic pink-eye, a back injury that put me in a brace for 6 months, knee problems, constant foot pain, sun-induced eczema, 3 months of bronchitis, severe insomnia, allergies, and crippling anxiety. I just didn’t know why.

It wasn’t until I had been out of school for 5 years that I would finally find out what had been wrong with me since birth: Ehlers-Danlos Syndrome, a disorder in which the body attacks its own collagen. 1 in 5,000 to 1 in 2,500 people are born with EDS, which is genetic. Because collagen is the most abundant protein in the body and can be found almost anywhere, EDS is truly systemic, affecting every part of the body, including the joints, skin, veins, stomach, eyes, muscles, tendons, gums, bones, and brain. We injure easily and heal slowly. (ehlers-danlos.com)

In 2007, however, when I started school, all I had was a bizarre collection of symptoms that made no sense to any doctor, let alone myself. But mostly what I had was a deep sense of fragility; that I wasn’t as sturdy as my classmates, that I was different somehow, that I could break at any moment.

Because I had no diagnosis I had no justification for this feeling and no way of explaining to the faculty what my limitations were and why I felt I had to respect the messages my body was sending. Instead, my constant anxiety about the physical aspects of the work became a storyline about how I mistakenly viewed myself as overly fragile. The implication, of course, was that it was all in my head.

It’s important to state that I received a world-class theatre education and am filled with admiration of my former faculty and gratitude for what they gave me. I am not in any way condemning my alma mater, but I do want to gently critique its able-ist attitude towards physical ability, and suggest a more compassionate and inclusive way of treating students with physical or psychological issues.

One day a teacher I worshipped asked us to do something that was hard on the knees. I panicked and said I couldn’t, and he turned to the class and said, “Boy, she’s got an excuse for everything, huh?” My classmates laughed, and I forced a smile and did the exercise.

When I told another movement teacher that I could not balance in any pose because my ankles would turn under, she said it was psychological and due to my anxiety issues.

Another teacher told me to stop wearing the orthotic insoles my doctor had insisted on because my feet would never learn to strengthen and create their own arches if I relied on the orthotics. I wanted to be a stellar student and actor more than I wanted to be a good patient to the doctor I saw once a year, so I stopped wearing the orthotics and damaged my feet permanently.

I had an innate knowledge that I wasn’t up to these things, but there didn’t seem to be any room for boundaries in the culture of the school, and I wasn’t strong enough to insist on those boundaries myself. Because of my inability to say no, I caused permanent damage to my back, feet and knees.

Now I’m a teacher myself. I’m lucky to finally have a diagnosis, and I want to educate faculties, not only about working with people with disabilities but about the likelihood that they’ll have students who don’t yet know about their disabilities and chronic health conditions. In fact, it is believed that 90% of people with EDS will never receive a diagnosis, and for those who do, it takes, on average, about 10 years. In my case, it took 35.

EDS is, of course, a fairly rare disease, and the chances of having a student with EDS, undiagnosed or other, are low. But the world we live in is increasingly populated by people with invisible disabilities and autoimmune disorders: fibromyalgia, Chronic Fatigue Syndrome, IBS, MCAD, mastocytosis, lupus, diabetes, rheumatoid arthritis, chronic Lyme, Crohn’s, ulcerative colitis…the list goes on and on, and the likelihood of having a student with one of these conditions is high. 133 million people in the US have a chronic illness—nearly 1 in 2 people.

That number is expected to go up roughly 1% every year, to 157 million by 2020 and 171 million by 2030 (according to the US Department of Health).

20.6% of Americans have a disability—about 54 million people. Why don’t we see more people in wheelchairs, or at least using a cane or a walker? Because approximately 96% of people who live with an illness have an illness that is invisible. (2002 US Census Bureau)

In fact, of the 26 million persons who are considered to be severely disabled, only 7 million use a visible device for mobility, such as a wheelchair, cane, crutches or walker. In other words, 73% of Americans with severe disabilities do not use such devices. (invisibleillnessweek.com/statistics)

And yet we still operate as if we’re living in a world in which we can tell everything we need to know about a person just from looking at them. For all our talk about not judging a book by its cover—all our rhetoric about refraining from profiling people based on how they look, about not making assumptions–we still think we can know a person’s physical capacity with one glance.

An article was recently posted to one of my EDS Facebook groups that exemplifies perfectly the challenges that people with invisible disabilities face. Theresa Summerfield, a young woman from the UK who has EDS, usually uses crutches, but she had opted to leave them at home because she was tired of the looks and comments she got from strangers. When she came back to her car—which had the correct disability badge on it—she found the following note:

I don’t know whose disability badge you are using but it’s not yours! How dare you park in a disability space when you are a healthy young woman. You should be disgusted in yourself. One day I hope you will know what it’s like to be disabled, then you will know. Parking in a disability space is not fair and you are a vile woman abusing parking for the infirm. I hope you rot in hell! (http://www.dailymail.co.uk/news/article-3469180/Student-rare-
condition-causes-joints-dislocate-40-times-day-finds-note-car-accusing-faking-disabled.html)

Obviously nothing so severe ever happened to me in school. But the repeated messages of invalidation, which I believed and even embraced and contributed to myself, caused me permanent physical damage and plenty of emotional stress. Because I knew I wasn’t believed, because I felt physically pushed beyond my capacity, and I wanted desperately to gain approval and avoid the shaming that I felt would come if I set physical boundaries, I struggled, throughout school and beyond, with a deep sense of unworthiness, a feeling that I must be crazy, I must be somehow creating all this physical pain and fear to…what, get attention? I wasn’t sure why I was doing it, but I knew that I must have been choosing to feel fragile, right?

Because the message from our society and the message I received from my classmates and even teachers was that health is a choice, and ill health is a reflection of some deep flaw in a person’s character.

Again, my faculty was astounding in almost every way, and I’m deeply grateful for the education I received. They were simply ill-prepared for our current world of invisible disability and mysterious autoimmune disorders, and no wonder, when the number of people who are struggling with chronic illness is higher than it’s ever been and rising every day. It’s a brave new world, and now that I’m a teacher myself, I want to make sure we’re prepared to support these young people who often don’t know themselves why their bodies don’t function the way their classmates’ do. We need to make sure that we support a student’s right to set boundaries, and that we treat their physical limitations as legitimate. Isn’t self-care, especially in the chaotic world of the entertainment industry, an important skill to teach our students anyway?

Those of us with chronic illness are constantly battling the tremendous fallacy that health is a choice. I can’t begin to count the number of times I’ve heard people say that they felt a cold coming on, but they “made a choice” to power through and it worked, the cold went away. I wish it were that easy. There is not a person among us who won’t, at some point, come crashing up against the realization that health is lent, not given; rented, not owned. There are choices we can make to prolong our health and manage our symptoms, but for people with chronic illness, those choices are so few and help so little. Pushing ourselves through a cold and just popping a few Emergen-C’s is not a good option for us, because the lack of rest and self-care may lead to a complete health crisis.

It’s important for teachers to know that most physical disabilities have psychological components that may affect a student’s well-being during drama training. Depression is 15-20% higher for the chronically ill than for the average person. Physical illness or uncontrollable physical pain are major factors in up to 70% of suicides, and more than half of those suicides were under 35 (invisbleillnessweek.com/statistics). If you have a student who is always sick or struggling with allergies, always has some kind of physical injury, and cries all the time, they’re not faking or crazy; they’re most likely dealing with an undiagnosed chronic illness, and it’s your job to help them get the best education they can get while accepting their limitations. If you do not accept that they have physical and possibly emotional handicaps, you will scar them further—and anyone who’s reached college-age or even adolescence with an undiagnosed illness has already been scarred many times.

Because of my experience as a disabled, pre-diagnosis student, it is of paramount importance to me to treat my students’ frailties, both physical and emotional, with great respect and humility. I never forget that I don’t know what’s going on in anyone’s body but my own. If a student tells me that something doesn’t feel right, or that they need to leave a class to rest, I have never and will never doubt their honesty or their commitment to their studies. I have never had a student take advantage of my compassion.

It’s about respect: respecting the students, respecting their bodies, respecting their limits; believing them when they try to communicate the signals their bodies give them; giving them space to set boundaries. Are there students who are lazy, who just don’t want to do the work?

Of course, but these are rarely the ones who struggle physically, because anyone with a physical handicap has been working twice as hard to do ordinary things for most of their lives, and they just want to be included, to not be left behind.

Listen to your students. Trust that they’re doing all they can. Respect their human frailty, and help them get the best education possible.

If you are a teacher or interact with students in any way, how can you apply this to your students and teaching style?[/vc_column_text][/vc_column][/vc_row]

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Victoria Mack Victoria Mack is an actor, teacher and writer living in New York City. She lives with her fiancé and dog, Tess of the D’Urbervilles. She tries to be strong and courageous every day, especially in managing her chronic illnesses: Ehlers-Danlos Syndrome, Mast Cell Activation Disorder, and Postural Orthostatic Tachycardia Syndrome. You can follow her at www.victoriamackteaching.com or www.victoria-mack.com.

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