Home Lifestyle The challenges of disabled & chronically ill workers exposed
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The challenges of disabled & chronically ill workers exposed

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[vc_row][vc_column][vc_column_text]The challenges of disabled & chronically ill workers exposed

Able-bodied workers have so many demands on them: creating a balance between work and family life, making enough to pay their bills, excelling in their chosen field, maintaining healthy friendships with co-workers and employers…the list can feel endless.

Workers with chronic illness have all those too, plus so many more. With all the energy we spend managing the many symptoms of our various illnesses and disabilities, it’s a miracle that so many of us find the strength to pursue our professional goals, either out of necessity or because we refuse to give up on our dreams.

So what exactly is different when you’re a disabled worker rather than able-bodied worker? Those of us with chronic illness work in every field imaginable and yet there are a few dilemmas that are fairly universal. Here are a few:

 

Your heart keeps beating the same refrain:

What if, what if, what if?

 

When you have a disability, it’s easy to worry that you’ll be asked to do something that you can’t do, or can’t do without pain, or can’t do without risk. I’m an actor, acting teacher and private coach, and this happens to me all the time. I’ll read a script that describes my character sitting in a chair reading; say yes to the job; and show up on the first day to find that they’ve changed the chair to 6-inch stilettos and the reading to playing tennis. My heart sinks as I figure out how to broach the subject with my director.

Which leads to…

 

Awkward conversations with employers regarding your personal health challenges are often a necessity.

 

The time may, and probably will, come when you will be asked to do something you know you can’t or shouldn’t do. And that’s when you have a choice: grit your teeth and find a way to play tennis in stilettos or slink up to your employer, blushing and smiling apologetically, and explain: “I’m so sorry, this is so embarrassing,”—nervous giggle, wringing of hands—“but I actually can’t wear stilettos or play tennis. Is there something else we can do that will still honor the emotional reality of the scene?”

And then come the questions. “Oh…uh…why can’t you?”

And you have to explain about your rare, invisible, made-up-sounding illness as you search their faces for a flash of regret that they hired you to begin with.

This is when ‘how you think’ really matters. Because in most cases, you will never know if that fleeting expression you glimpsed is regret or merely indigestion. How you interpret your reality at this moment is your choice: do you choose to believe that everyone hates you because of your illness, is disappointed in you, wishes they’d hired less of a “squeaky wheel,” as one director once called me? Or do you decide, regardless of what they really think, that you are darn good at your job; that being good at any job when juggling the relentless demands of a chronic illness is an amazing, beautiful, awesome thing; and that you have a right to find meaningful work, to seek the income you require to stay alive and healthy and safe and happy, even if it’s occasionally a little inconvenient for your co-workers?

It may help to remind yourself that the Americans with Disabilities Act (ADA) of 1990 makes it illegal to discriminate against someone with a disability at work and insists that employers make “reasonable accommodations” for qualified people with a disability. There is, of course, a wide gulf between having a protection on paper and actually feeling protected by it, but the law is on your side.

 

Big Deal or Little Deal?

 

Every worker with a serious health condition has to make a choice concerning how we choose to present our illnesses, if they come up at work—as a Big Deal, so people understand how real our limitations are, or a Little Deal, so we don’t risk being passed over for opportunities or even losing our jobs.

Most of us with chronic illness probably feel that our health conditions are a Big Deal. Ehlers-Danlos Syndrome, my disability, affects every system in the body and, therefore, basically every aspect of my life. Even on good days, this feels like a very Big Deal.

In my professional life, however, this isn’t so simple because I want—and let’s face it, I need—to keep getting work and, if people see me as the Sick Girl, I won’t be hired. It’s hardwired in most of us to want to feel useful. I love teaching and acting, and in my wildest dreams of unlimited fortune there is never a scenario in which I don’t work. Plus, my work provides me with not only income but health insurance.

The great fear for many of us is that, if we present our illnesses honestly – as a Big Deal – people will start to see us as unreliable. The truth is, most people with disabilities and chronic illness work twice as hard in order to keep up. I have never missed a show because of my health issues even when I was in pain, throwing up until the curtain rose, or had gotten out of surgery the day before. However, if I develop a reputation as a sick person, people will worry about my limitations.

And, of course, there are situations in which our limitations will be problematic. I know a nurse who has been plagued by the air fresheners used in her hospital wing. She has begged the department to stop using them multiple times but has repeatedly shown up to work, taken a few breaths, and gone into anaphylaxis.

In this case, she understood that it was imperative that she explain that her illness (Mast Cell Activation Disorder, a common off-shoot of EDS) is a REALLY Big Deal. The consequence of that decision was that she gained a reputation for being “difficult” and now lives in fear of losing her job. The hospital is legally bound to remove the air fresheners and not fire her because of her illness but, of course, they can fire her and argue that it’s because of her perceived attitude. This is a challenge that an able-bodied person is blessed never to have to face.

 

Don’t Ask Don’t Tell

 

When you feel that you have to keep your illness a secret in order to keep your job or be seen as a viable candidate for promotion and other opportunities, you have a ‘Dirty Little Secret’ and that’s a terrible feeling.

I find that when I lie or evade to keep my condition a secret I feel even more identified with it. I start to become, in my own mind, The Sick Girl, and that’s a secret identity no superhero would ever want. I start to see everyone and everything through the lens of my own difference and isolation.

Although sometimes it’s better not to mention your health difficulties, I don’t recommend it if it’s all possible to be more upfront and honest. Either way, make sure you have a community you can reach out to when you need them–like your fellow Health Warriors right here.

There’s no question that managing a chronic illness on top of a busy career is no walk in the park…

But is there anything good that comes out of it? Any silver lining? I think so.

 

You become the village apothecary

 

Ok, not apothecary exactly but, when you have a chronic illness, you tend to do way more research than the average Joe into nutrition, supplementation, and alternative therapies. Being the office health maven can be a lot of fun. After all, no one will know as much as you do on the subject and your co-workers will run to you first when they’re struggling with—well, anything. “Well, Mallory, if you’ve been breaking out in hives every time you drink wine, you may have a problem with high-histamine foods. I’d suggest Culturelle which has the histamine-reducing probiotic L Rhamnosus GG. Get the Digestive Health formula unless you have trouble with inulin, in which case the Health and Wellness formula should do the trick.”

 

You’re unique

 

Sure, no one wants to be identified with their illness, but there are perks that come with it. Didn’t you always want a cool nickname like “Bone Broth?”

 

Having a chronic illness can make you a more compassionate person and co-worker—which may even make you better at your job

 

Those of us with chronic illnesses and disabilities know about suffering. We know about isolation and loneliness. We know about fear of the future. We know about grief, about mourning a life you expected and are learning to let go of.

And all of that, if we let it, can soften and open our hearts so that when we recognize those feelings in others, we fill up with compassion and care, and we want to help.

On one of my many chronic illness forums, someone once asked what we all do for a living. Hundreds of people responded and almost every single person wrote that he or she had gone into an artistic or service field. Suffering as we have, we are Masters of Compassion and isn’t that what both fields are all about? I would never have gone into acting if I hadn’t been so enamored of the human experience and so passionate about telling the stories of people whose narratives are often deemed insignificant. And the service fields—teaching, acupuncture, spirituality, all of them—are all about caring for others. It’s no coincidence that the woman with MCAD I wrote about earlier was a nurse. With all her health concerns, she chose to devote her professional life to helping other sick people.

And isn’t it astounding that those of us with chronic illness, who often feel so exhausted by the effort it takes just to keep ourselves going, are often so dedicated to finding extra resources of energy to help others too? Isn’t that a miracle?

I don’t know what it’s like to be an able-bodied worker and I never will. But here’s one thing I know beyond a shadow of a doubt: those of us trying to live full lives while managing a chronic illness are superheroes. With so much energy poured into ourselves, we still manage to pour more into others. We are heroes and our superpower is Love.

Keep up the good work, heroes. The world needs you.

 

If you’re in the USA and you believe you have experienced employment discrimination based on a disability (including mental illness) you have a right to file an administrative complaint with the U.S. Employment Opportunity Commission (EEOC) or a state or local anti-discrimination agency. Contact them here:

U.S. Equal Employment Opportunity Commission
1801 L Street, NW
Washington, DC 20507
Phone: 202-663-4900
Website: www.eeoc.gov

For more info on the ADA and how it protects you, be sure to check out https://www.eeoc.gov/facts/ada18.html[/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.

Comment(5)

  1. I appreciate the fact that the author so beautifully articulated the silver lining – what a wonderful way to look at living w a challenge! Thank you Victoria for writing this!

  2. A terrific article, informative and humane. There are so many with these kinds of disabilities now–auto-immune, genetic, whatever–and it’s important for the rest of us to realize more clearly what it’s like for them. This article really helps.

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