Up until two years ago I was working part time. A year before that I was working about 30-35 hrs. a week. I no longer work because my chronic pain and chronic illness make it impossible to do so. When I say impossible, I mean impossible. Just getting to work would be a dangerous game of Russian Roulette. Though it is always financially tight in my house, we make it, just barely. Disability is extremely difficult to obtain, and while I have a hearing scheduled, there is no guarantee it will be granted. I write from home, and while it can be difficult when I am having a flare, or when my symptoms are simply too much to deal with, I always have the option of just staying in bed or calling it a self-care day and just trying to relax. Others out there have no other choice but to head out to work. This is my salute to those spoonies who manage to get to work and be teachers, nurses, day-care workers, business professionals, first responders, cashiers or the other million jobs out there. I admire you.
According to a Rand study, “approximately 60 percent of American adults now live with at least one chronic condition and approximately 42 percent live with more than one.” (Irving, 2019) While the nature of every chronic condition varies in severity, there’s a good chance that within this percentage are those, with the types of illnesses/pain that makes it a challenge to go to work. If not impossible some days. Many of these are invisible illnesses, meaning that co-workers, management, customers or students, would not know that they’re sick. Many of these employees work hard and work even harder so that no one knows that they are sick. This is not for any other reason than, people having the habit of treating you differently when they know you are sick and also because the standard for good employees remains the same, whether you are sick or not. Meaning, it doesn’t matter why Bob or Sally called off sick three times in one week, even if Bob just wants to stay home and binge watch Game of Thrones and Sally is in the midst of a flare and can’t move from her bed. (This can be vice versa by the way. Not picking on Bob!) This alone, is enough for chronically ill employees to want to keep a low profile.
I wanted to know how some spoonies were managing a working life, so I reached out on Twitter and was lucky to get a few responses back. I think it is important for those who know nothing about chronic illness, as well as those struggling with it, to see how fellow spoonies are managing things. It was agreed that it would be anonymous, to safeguard against the possibility of an employer or a co-worker who might read this and I think it highlights some of the added stress placed on the working spoonie. There are some who shake their heads when they hear our complaints, thinking that we’re asking too much and the world just isn’t going to be that perfect utopia where everyone understands. But it isn’t asking for utopia. It’s asking for a level playing field where our illness isn’t held against us.
I began the interview with a few simple questions of the kind of job they had, age, and how many hours of work per week was expected of them. As I expected, they were all very diverse in what they did. The system auditor is in her early 30’s and works for a group of hospitals, auditing their systems to ensure none of their employees is accessing medical records that isn’t a part of their job duties. She works 40 hrs. a week, plus recently finished an Associates degree and plans to get her Bachelor’s degree soon. The teacher, is in his late 30’s, working 40 hrs. a week at a public school. The sales representative works for a gymnastic center, is in her mid-20’s and rarely works past 40 hrs. we week. Lastly, a cashier works for a restaurant chain, is 31 yrs. old and usually stays within 40 hrs. a week.
In asking about how their chronic illness affects them at work, the teacher explained that, “teaching is more physical than most people realize. Standing, walking, bending down and reaching up. And, heaven forbid I need to kneel down to get on my student’s level.” The system auditor said that, “while she is grateful that my job is at a desk, there are times when sitting for too long causes it’s on problems, so I try to find ways to get up and move around even if it’s for a walk around the building for no reason.”
It’s easy to think that an individual doesn’t have other responsibilities besides work, or that those responsibilities don’t impact them physically, making their ability to perform their job that more challenging, but it does. The teacher, “I basically run my house as well, cooking and cleaning, doing dishes and laundry, taking care of pets and grocery shopping.” Though he has a partner he does this to, “prove my worth as a contributing member of my family because I’m afraid some day I won’t be able to do as much.” The sales rep. said while she still lives at home, “I have chores, which includes running errands and shuttling siblings to and from school/work.” And even if they have help at home, it can still be a challenge. The system auditor explains that her husband hasn’t been the best at cooking/cleaning and asking makes her feel like she is nagging so, “we’ve settled on him having one consistent chore: dishes. I put them away though, because he’s terrible at remembering where things go.” Sometimes those negotiations are enough to make things easier, like the cashier and her boyfriend, whom she shares, “makes the meals most of the time and goes to get her bus ticket in the morning so she doesn’t have to.”
Broaching on the subject of their work a little more and asking if there is anything their workplace does to help, like special accommodations, there was mixed and hesitant responses. The systems auditor explains, “I asked for a convertible monitor/keyboard stand so I can alternate between standing and sitting at my desk, but they want specific reasons and my diagnosis from my doctor, and I’m just not comfortable sharing that.” She also adds, “I definitely think that asking for accommodations would limit my career.” Like her, the teacher says, “It labeled me as unreliable and not a team player.” Even though he receives accommodations through ADA and said it was more than, “I didn’t have to perform certain tasks, it became that I wasn’t allowed to. Even if I was having a good day and felt I could do more. I couldn’t or else I’d look like I was faking to get accommodations.” Driving home the reason I chose to write about this, is when the systems auditor tells me that, “I don’t want to limit my career opportunities because I have chronic illness when there is a penalty process for calling out sick-too many times, you’re fired.” The worry of being perceived as faking your illness to receive special accommodations and ultimately being fired, because you call in too many times, or are unreliable, is very real in the community. This isn’t the first time I’ve heard this, and I have even experienced it myself.
I was curious to know how real the worry was of their future, in regards to their continued employment, if working was out of necessity or desire and if they’d concerned alternate work or disability. While all my interviewees need to work, there is no doubt that they want to work. Our profession is a big part of our identity and losing it can have a big impact. That being said, the systems auditor candidly shares that “it sucks that I have to even think about my health when deciding on furthering my career.” She explains that she did a “stint of time working from home” and it was nice not having to stress about her health impacting her work. While she feels that she has some years still, of working at the hospital, there is always the possibility of her health deteriorating but, “it’s just too sad to think about” and prefers to “cross that bridge later.” When thinking about the future, the teacher shares that this could “very well be his last year in education” and “hates it because I’ve always been such a hard worker. I take pride in my work, but physically I can’t work much longer.” The cashier chooses to see things as “it could be worse” while the sales rep. “constantly worries about the future and not working” though she keeps her chin up and says, “if that is my fate, I’ll accept it with open arms.”
It often amazes me how resilient we are in the chronic illness/pain community. Despite the bad days, and set-backs, we find a reason to continue on. This is our life and the only recourse we have is to make of it what we can. To enjoy it. I asked my friends how they keep a positive outlook and stay motivated every day; here is what they told me. In a humorous tone, the systems auditor says that she has “really bad days too. Days that make her cry and wallow in self-pity. I try to prepare for those days, making sure to take stock of things like pain patches and I use positive self-talk and meditation.” The teacher draws his strength from his kids, “I love the kids I work with. Even if the job is killing me, my clients keep me alive.” The sales rep. tells me that she doesn’t really know, “it’s just my nature, I guess. The only thing you can do really, is be positive and make every day count.” While the cashier finds strength in family and her father who shares many of the same autoimmune disorders. “My role model is my dad, who has AS and lupus and who is 57 and goes to the gym every day and looks great. He has a great outlook on life.”
These are just a glimpse into the lives of people who struggle with chronic illness/pain. I wanted to shine a light on them because people outside the chronic community think if you are working, you must be okay and little do they know, or realize, how much of an effort it takes to do what they do. These are people who you come in contact with ever day, who smile and do business with you, teach your kids, or wait on you at the restaurant and who you’d never know are in pain and struggling. Sure, it’s easy to say that they have to maintain a professional appearance and chronic illness/pain doesn’t fit into that equation, however, I endeavor to treat everyone with a bit of humanity because we don’t know what struggles they endure and I think everyone would agree that they’d like the same.
Irving, D. (2019). Chronic Conditions in America: Price and Prevalence. [online] Rand.org. Available at: https://www.rand.org/blog/rand-review/2017/07/chronic-conditions-in-america-price-and-prevalence.html [Accessed 12 Feb. 2019].
Liza is a chronic pain warrior from Houston who has been chronicling her journey through chronic pain and illness on her blog: http://lovekarmafood.com. She is a frequent and valued contributor to the National Pain Report.