How Should You Treat a Co-Worker with a Chronic Health Issue?

You might see someone limping with a cane down the halls, and then a few days later they’re fine. Or you know a co-worker has lupus and you are not sure what that means for their role in your project. Or you are just empathetic but unsure. I am not an authority on invisible disabilities, but I do have a few–two autoimmune conditions including Rheumatoid Disease, which affects my movement and produces pain–so I thought I’d take a stab at some imaginary questions. I’m not an HR professional. This might be incorrect! It’s just my thoughts. Feel free to leave other questions in the comments.

Is a person with these conditions (which I’m going to describe as invisible disabilities) less able to work?

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My cane and my heating pad at my desk. Showing up like a rock star.

Unless they are a lumberjack—and maybe even if they are a lumberjack—each situation is unique. Jobs are a fit or not a fit for a wide range of reasons, and determining that fit is the right of the employee, the supervisor, and HR—not you. Instead, check your own thinking: are you assuming that when you see signs of physical impairment, there is cognitive or motivational difficulty? There might be those, there might be others–but it’s probably not something you are qualified to evaluate. I can ask that difficult question because I have a sometimes-visible disability and yet I too berate myself for being less capable. I’m not less capable. In fact, in some ways I’m more capable, for reasons I’ll get into below.

 

The truth is that a person with a chronic condition who is employed is actually a wonder of neuroplasticity and adaptation. People can adapt over time to conditions that would be unbearable if they emerged suddenly. They are forced to grow their lives around amazing challenges and yet make life work, to be functional.

If I have someone with a chronic condition or an invisible illness on my team, is that going to affect my due dates? What if they have to go into the hospital?

Not everyone who has one of these conditions needs time off of work, but every single person alive faces the unknown of illness and hospitalization. Cross that bridge when you come to it, but you do not need to expect any additional degree of unreliability from someone with a chronic condition. That’s a misconception about the nature of chronic illnesses. If there’s a serious issue, the person will make you aware of it.

In what ways is a person with an invisible disability or chronic illness a wonderful employee?

Hahaha—that’s a great question. (I might have planted that one). A person with these conditions can be a great liaison to other employees and to potential customers with these challenges. He or she can help you adapt your business, your website, your services, to the needs of this huge population. A person with these conditions is often a complete wonder of efficiency, because he or she has had to make difficult choices with regard to precious energy and time that can’t be squandered. People with these conditions get as much or more done because they know their own energy levels and work abilities intimately. They are mental and emotional athletes. They often have a high degree of empathy, and in some cases their ability to design work-arounds in their own lives has resulted in enhanced creativity for out-of-the-box solutions.

Should I give the person extra leeway with deadlines, etc.?

That’s not necessary unless they ask for it—like any other employee that needs a flexed deadline. And we all do, for all the shit life throws at us.

Some days a person has visible aids, like a cane, a cushion, limb or hand supports. Does that mean the person is feeling his or her disability most acutely and that it is gone on other days?

Actually, no—not at all. One of the difficulties of an invisible condition is that the discomfort is usually chronic. A particular aid might be called for on a particular day, but the hardware just means that a specific part is having difficulty, and does not even act as a barometer for when the worst days are.

When I see a person with one of these aids, does it help to express sympathy or to ask how the person is doing?

This is a very individual thing, but in my case, the answer is no. I want to try to normalize my condition, to have it be a part of me but not the most obvious part. I want my coworkers to understand that some days I have my hardware and some days I don’t—but that every day is hard. Because every day is hard in different ways, expressing sympathy only when the hardware appears makes me feel a little like the person doesn’t get my condition (it’s fine if they don’t—I barely get it). The worst part, however, is to associate my cane with a sad expression and the need for sympathy. I love my cane. I love it. It helps me walk, it announces my disease as visible, and it does a lot of other things for me. The worst days are the days you can’t see. So when you see me with a cane, just say hi.

Should I suggest various things that have worked for my niece’s boyfriend or that I have seen on Facebook, such as supplements, yoga, etc.?

No. These people are barraged with well-intentioned advice. Think about what it must be like to have a life-long condition that other people assume is easy to fix when in fact doctors have pronounced it incurable. What you are saying to the person is that they have overlooked something obvious and so therefore that they might be a little dumb. You don’t mean it to sound that way, and you’re just trying to be helpful, but it’s a little insulting, and it doesn’t help to build connection.

Should I use this person’s condition against them in power struggles and office conflicts?

Hahah! You’re FIRED! No, seriously: This is probably too obvious to say, but it needs to be said: if you in any way imply that the person is less able to do their job, is weak, is less qualified, or is a burden, you are not only wrong but you are also doing something that is immoral, unethical, and illegal. You are bullying based on physical ability, which is reprehensible.

xoxox

Sonya

Autoimmune Parenting

A fever, lying on the couch under the green blanket, feeling sorry for myself but more than that sorry for my kid, for his life that in this feverish insane moment looks like neglect. He just got home from school and he's playing video games and he just had an argument with the neighborhood kid and I can very easily imagine staying on the couch like this for hours. Here's his mother lying on the couch in a fever–but it's not even the kind of fever where you get chicken soup and time off from life. It's life, this autoimmune disease that comes and goes. It's come and gone every day or week since he was six, and now he's almost ten. He's seen me hobble around with a cane. He knows I have something up with my joints and something wrong with my thyroid. But now I don't care about those things. I just wish I could get up and do some kind of–what, cupcakes? Fall centerpiece arts and crafts with him? Things I never do when I'm well? Something. Instead it's screen time and brain rot and I am overwhelmed with what to make for dinner.

By the way–yes, I have tried and am trying everything. Sometimes when people ask if I've tried a diet thing to cure inflammation or acupuncture they mean to help but it makes me feel guilty, like if I just worked harder I would cure myself. I have a degree in this disease. Actually these diseases–I have two. Don't worry about it–it's okay. What I'm thinking about is not the sickness in the abstract but my life here on the couch and what it means about my parenting.

And here I am on the couch, dipping down into visions where I am a bad teacher and a mediocre mom and everything. By the way, in case someone on my tenure committee is reading this: I am an awesome worker and everyone will tell you so, and I get everything done that everyone asks me to do. Think of it this way: the time that other people spend drinking, watching sports, or getting their nails done or playing Candy Crush or cooking fancy meals, I spend sick. And I have lots of good patches. I'm just in a bad patch. But it all comes out in the wash. It's fine. And I'm not even that much of a drain on the health plan, in case anyone is cruelly evaluating me on a monetary basis: some scrips and blood tests and mostly shoulder shrugs and the obvious statement: this is incurable. Easy. And I'll be a good worker for a long time, and I am like Neo in the Matrix with pain and discomfort, a ninja. Like being a mom, this constraint has made me work smarter. Rah rah.

But back to the level of humanity, it's difficult, as humanity can sometimes be. Everyone gets sick. And the recent blood test results seemed worrisome but in a way that I couldn't interpret, and I put in a call to the doctor today and didn't hear back, and I didn't hear back either from the other doc who ordered the tests. So I am on the couch wondering what those numbers mean and if they can fix it and wondering why I have to wait for three more weeks to see a new specialist because my last brilliant specialist had to close her practice. At least I have insurance. If we were Canadian I wouldn't have to do that little simpering dance of gratitude for what is a human right. But anyway.

There's so much I should be doing. I didn't feed the bearded dragon lizard his chopped vegetables. I need to put a load of clothes in the dryer. And I have deep suspicions that my insights about Ben Franklin's Autobiography won't seem very insightful to the honors students in my seminar tomorrow. I responded to a few student emails and slept for an hour. I worked for six hours this morning but it never seems enough.

My son comes upstairs and I tell him out of guilt that he needs to get off screens in a half an hour and then he can help me figure out what to cook for dinner. He says okay and I go back up and lay on the couch and start to cry because he's so good, and I have a half hour before I have to do something practical. I text a friend with autoimmune stuff and she realizes pretty quickly that I'm losing it, so she calls me instead and she makes me laugh and says, “You want to make your son cupcakes? Do you actually ever make cupcakes?” No, I said. I guess I must be a bad mom.

You're a great mom, she says.

I feel like crap and I feel afraid of everything, I say. When I have a fever I get this thing I call “fever doom” and I can't think straight and my husband is working tonight.

I get that too, she says. Tell your son to make a PB&J and he'll be happy.

He comes upstairs and I start to cry and say, like I always say, It's not you, I'm not mad at you. I'm just not feeling good. You know that, right, buddy? It's my joints and my thyroid.

He nods. Let's go to the library and get Chinese food, he says.

Okay, I say. Good plan.

We go to the library and he checks out a Pokemon game and a video and a book in a series he likes. Both inside and outside he is scaling walls, sliding down banisters, attempting Parkour. He is not ADD, he is HYB (healthy young boy). On the way out a guy looks at my son as he leaps in midair between two concrete blocks and says, “I wish I had his energy.”

We get Chinese food and on the way we talk about why it's good to buy from local businesses. I'm not sure when this conversation started, maybe a month or six months ago, but it's been on his mind lately for whatever reason, so we often list the local businesses we buy from. Tonight we talked about why it might be better for the family running the Chinese restaurant to work for themselves rather than having to send their money to McDonald's Corporation.

Okay, I thought. He's getting vegetables in his Chinese food and we're talking basic economics. I can't do fall centerpieces but I can do social justice economics.

We drove home and unpacked the Chinese food and I stared at the unwashed dishes in the sink. This is it: the sink, and my hands and wrists burning as I grab the first glasses to put them away. So. Tired. But we keep on, and I tell him to get out the soy sauce for him and the fish sauce for me. Eat your carrots, okay? You need them to get strong. And the fever hasn't gone anywhere, and I pour him milk, and he tells me to come downstairs and sit with him. You can type on your iPad, mom, he says. I can't see much; it's like the edges of my vision are gray, but that makes things simpler.

Tonight I will tuck him in and go right to bed because extra sleep helps, and I hope in the morning I will feel better and get calls from doctors, and I'll drink all my special potions and do my special vitamins and relaxations and be the best mom I can be. And he's already the best son. And this won't be cured because not everything is a princess story, but– but what…. I feel the urge to write “That's okay” but it's really not okay. It just is. And it's okay at some larger cosmic level that I can sometimes see and sometimes utterly lose sight of.

 

Review of “Hot Cripple”

From Feb. 2012:

I saw a review in Elle (yes I read it for the articles and also for the pictures of purses I can’t afford) for a memoir entitled Hot Cripple. The blurb got my attention, because the family of memoirs advocating for a wider healthcare safety net is very small, and I want to get to know any siblings of Cover Me I can possibly find. So I haven’t read the book. I’m just writing this to process the title. Thanks for being here while I work through the phrase “Hot Cripple” and its relationship to my genre. The author, Hogan Gorman, was maimed in a car accident. She is an actor and has written a one-woman play about her experience. Maybe she called herself “hot cripple” and is reclaiming the word cripple, as some disability activists advocate. But the phrase “hot cripple” (along with the decapitated boob-a-licious lady-body on the book’s cover) seems to make a plea for attention based on a play on stereotypes, and the element of surprise: as in, “Wow, I didn’t realize cripples could be hot. Did you, honey? Let’s buy this book.” I have not studied the incidence of hotness in the cripple vs. non-cripple population, but the title makes me think less of humanity–and the publishing industry–in general, no matter how tongue-in-cheek and hip it’s supposed to be. Okay, BUT. But I’m going to read and buy this book, I think, because I’m interested to see how it’s written, as well as to see whether the content matches the cheese of the cover or is smarter than the cover. I’m interested to see how any author writes memoir in which she tries to messily connect her life story in all its detail to the larger plight of other folks. Memoir is misunderstood in a way that wounds me very slightly–I am much more interested, ultimately, in whether we get universal healthcare than whether this book raises or lowers memoir’s stock with critics. But I’m interested in this genre because it does something hard, and trying something hard and failing often is not necessarily a sign of stupidity or weakness. It’s a sign of trying something hard. BUT in another way, the title here is exactly what is wrong with the memoir image. Memoir does something inherently risky in referring to real life in prosaic terms, a subject area in which the reader (one hopes) also has some authority and experience (This I learned from Dan W. Lehman’s amazing book, Matters of Fact: Reading Nonfiction Over the Edge.) We are at once empowered as readers of memoir to doubt the story world and sanity of a narrator because the narrator is no more an expert at life on the planet than we are–unless the memoir is about an expert relaying his or her expertise, which makes it a memoir of a different (and less risky, more authoritative) sort. Memoirs like “Hot Cripple” place their stock in a paradox. The title seems to state that the narrator’s perspective is worthy of attention because of elements of identity as evaluated by stereotypes and general perceptions. The narrator is posed as an expert on the unsought experience of the “hot cripple.” We didn’t know we were looking for that kind of expertise–in fact, it’s a joke on the reader, because the real pull of a memoir is supposed to be a connection with an individual and complex narrator, a human being whose view on the world connects and maybe overlaps or maybe challenges (or both) the perspectives of other humans regardless of individual life experience. I read memoir to have my sense of humanity challenged and reshaped, to find a sense of communion and also growth or at least non-stasis. Still, there’s a dehumanization in the title that runs too hard against the book’s stated aim of rehumanization. Would you read The Autobiography of Benjamin Franklin if it were titled “Overweight Balding Guy in Teeny Glasses and a Vest”? In that case, of course, Ben Franklin matters because he is a public figure, which gets at the problem of the memoirist who is not a public figure. How, how, how might we bid for our authority? The easy way to sell books is to bid based on humans as surprising confounding products with features that seem mismatched. A Christian Who Drinks! An Accountant Who Pole-Dances! Yawn. Stop yanking my stereotypes and introducing new ones. So we have a marketing problem in memoir, but that doesn’t make me love memoir any less. In fact, I love it more for being a problematic, poorly dressed, half mass-market confusing un-snooty genre with gems and trash and odd birds all mixed together in the same Bargain Book Bin. I wanted to be a personal essayist, I suppose, and I write personal essays sometimes, but ultimately I’m a memoirist at heart. And I care more about universal healthcare than about the whether Neil Genzlinger thinks memoir is cool. So I’ll let you know what’s up with “Hot Cripple” after I read it.
The Review:

I had a few hours yesterday waiting in a doctor’s office (no bitching about that, my endocrinologist is a goddess) and so I got to finish “Hot Cripple” by Hogan Gorman (Penguin, 2012) which promises this story: “An incurable smart-ass takes on the health care system and lives to tell the tale.” How could I not read it? So I did. I love that a book takes on social class and also uses the words “vajayjay” and “funner.” The one teeny issue I have with it is that I don’t think she actually writes much about the healthcare system. But I’ll get to that. And she is forgiven the title “Hot Cripple” because some kid called her that on the street as she was limping by. First I want to say that I’m full of love for Gorman, who I don’t know, because our books appear to be kindred spirits in some way. I like that she took on an issue of social class and told tales that were hard for her to tell and that she made it funny. It’s way funnier than my book, with a consistent deadpan delivery that makes it feel like a one-woman monologue rather than a narrative. This makes sense, since Gorman is an actress and it started as a stage show. And we have the same cover design: Apparently when book cover designers see “woman” and “healthcare” in the write up they think “naked stock-photo chicks without heads.” But anyway.

Is it just me?

Gorman is a model-turned-actress, and she starts the book on full-steam “don’t hate me because I’m beautiful.” As a peasant-build swarthy woman, I found myself thinking, no, I never did want to work out that much, so I really don’t want to be you. This is a lot of the book’s hook: “Sex in the City” meets “Something That’s Never Ever On TV Except Maybe with Rosie O’Donnell or Archie Bunker.” The book is very New York and fashion centric, throwing around names of labels and drinks and so forth. Anyway. Gorman was working as a cocktail waitress to support herself as she switched careers from modeling to acting. She got hit by a car in a horrific accident, suffered major trauma to the head, back, and everything else, and spent two years recovering. Holy smokes, it sounded excruciating. Despite the trauma, her funny voice carries the book. I enjoyed reading—and was stunned by—her growing awareness about what happens to people who suddenly can’t work. She’s honest about all of her self-loathing and crises of faith, and there are vulnerable moments immediately transformed into sarcasm. Gorman was raised by a single mom, and I like that she includes details of living on the edge financially in her childhood. It helps me relate to her and gives the book some depth. But I had two major issues with the book that actually made me squirm, all snark aside. First—and biggest. Gorman is actually SAVED by the Social Security safety net. That is the meat of this book. It’s not actually much about healthcare at all despite moments of mooning at sexy doctors and excruciating pain. Here’s what saves her: Social Security Disability (which she gets), food stamps (which work for her even though it is not enough to feed one’s self with), Medicaid, and the no-fault law in New York which provides some funding for pedestrians hit by vehicles. She has battles with all of these government offices, but she gets her benefits and struggles to adjust. Then she is basically abused by the legal system. She has a crazy judge, gets a settlement, but it’s not anything to make her rich. Again, the legal system around car accidents is not healthcare. Healthcare is doctors and nurses and other practitioners curing people. Health Insurance is that cesspool that the practitioners and patients have to wade through to do their jobs. This is a huge misunderstanding. The battles about the Affordable Care Act (maybe you’ve heard about the recent Supreme Court thing)—and some people’s hatred of the act—might have something to do with this massive confusion. Maybe people mush all this “helpy” stuff together. Maybe they think if they strike down the ACA, they would be getting people off food stamps. I think the confusion in Gorman’s book—and the fact that a major publisher, Penguin, would make no move to correct it—indicates pretty obvious cluelessness about what is and is not healthcare. One of the things Gorman is angry about is that it takes her months and months to find Medicaid and other social services; she wonders why there “isn’t any communication between these government agencies and the general public?” (p. 170). I think this is a big issue with people who either hang out with or identify as privileged. Gorman has a huge issue with asking for help; she mentions more than once that she never does it. She never talks to a hospital social worker or a chaplain, who would have immediately steered her in the right direction. She has apparently never had a friend or acquaintance who admitted to being on any of these services. The government has wisely decided not to focus its outreach materials about Medicaid on the cocktail bars of Manhattan. The contribution of her book is that she’s breaking silence about the shame of social class issues, even though her inability to do so at the time prolonged her agony. Obviously, this is much harder and more traumatic for people who are identified with their class situation as a part of their identity. This leads to my second biggest issue, and the only place where I felt like Gorman was shading the truth either in one direction or another. It’s a throwaway moment at the beginning of the book: she says she didn’t have insurance because she “couldn’t afford it.” She gives enough class markers to let us know that she was maintaining her Louboutin lifestyle with consignment store shopping, but she doesn’t give the dirt: did she actually LOOK for insurance, or did she blithely assume she wouldn’t need it? If she assumed she wouldn’t need it, she made a dumb innocent mistake and I want her to own it and move on, because that makes her part of a huge group of youngish people who shouldn’t (I think) have to wade through a confusing system that will ultimately just screw them anyway. But without insurance, how does she get birth control, etc.? Inquiring minds like me want to know that stuff. Health insurance questions, especially for young women, immediately lead to lots of real questions about bodies and choices, and I want to know. Because she doesn’t tell me, I don’t get the benefit of understanding what her story really means. Is she clueless, or is she shut out of affording even a catastrophic plan because of her cocktail waitress take-home pay? Either story is important. There are two tacked-on sections at the end where she gives readers an overview of the ACA, and says that she still doesn’t have insurance because she now has massive pre-existing conditions, and the ACA would forbid that discrimination. The research chunk doesn’t sound like her voice. The personal experience after the book about still not having insurance…That’s the book I want to read, and that’s the healthcare system. Then there’s a section where someone gives her a free first-class ticket to India and she goes and has insights at a meditation retreat about sharing her story and that she’s at peace with what happened. I didn’t like that, and I am restraining myself from writing more. I don’t like (okay, I loathe) the Eat-Pray-Love spiritual colonialism of going to a Third World nation to get enlightenment and then coming back to make this into a product to sell to people. This would launch me into an Eat-Pray-Love diatribe, and since I hate it when reviewers go off on tangents that aren’t central to the books, I will not do it. Big picture: the good news is that the ACA is intact for now, but there are many cracks through which people without insurance will continue to fall. It’s a complicated, un-integrated system. Healthcare is still private. And Gorman got saved by the public sector.