The Working Spoonie

The Working Spoonie

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.

Liza Zoellick

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.

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Authored by: Liza Zoellick

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.

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Liza of your stories are dead-on. I used to work for the school. Very difficult when you have chronic migraines & have to talk all day. Very difficult to follow your task that you’re supposed to be on &
keep the students on task. Hard to be cheerful & not let anyone know that you have a migraine only a very few people knew. God forbid that you tell the students that you have a migraine bc then they get rowdy. The few teachers that knew could always tell that I did not feel well. But one teacher really was very nice to me & she would say that I am the hardest-working person. Which really made me feel proud of myself. Losing the income was very hard. I see signs of now hiring & wonder what would that entail but I know I’m just dreaming bc when I would get home from work I was so exhausted I would collapse. I didn’t even want to eat or much less cook or do anything else. By the time I got off work the pain was overwhelming. And I would have to get up & do it all over again. I ate so much aspirin that I’ve ruined my stomach trying to make it through the day. Even with all the steroid shots in the spine & the shoulder. My imagination made me think someone made a voodoo doll of me to be torturing me. Now without work & a lot less income it is still very stressful to do things on the good days. I remember before all this happened to me , I would work from 8 a.m. to sometimes to 1 a.m. How I used to love the projects. If I accomplish 1 thing each day I feel its progress. But times I’m frustrated that’s all I did.
I could do more when I had pain medication. I guess it’s the DEA/ Prop that’s made the voodoo doll of me.

Maureen M.

Hi Liza, yet another excellent post of yours! I loved reading it. I haven’t been able to work since 2004. Yet I continue to grieve that I can’t. I was a nurse for 31 yrs when I became disabled due to a spine injury, failed surgeries and consequent pain related issues since. I loved my job. I pray for those with chronic pain/illnesses who must work despite their conditions. A few years back I attempted volunteering on a part time basis but just couldn’t keep up with it.
I honor all those who manage somehow to do it. God bless them all! And you for all that you contribute to our community.
Keep strong spoonie warrior! Maureen

Linda N Coffman

Thank you so much! This was a wonderful article and as a middle school math teacher who suffers from painful chemo induced peripheral and autonomic neuropathy, I can relate. The teacher expressed my thoughts and feelings exactly. My public school will not get me a new laptop, keep offering a desktop. My neuropathy affects my fine motor skills so much. I can only type on laptops or touch screen. They wanted a diagnosis and doctor note. Nope! I love teaching, but am so exhausted, it is killing me. It is so hard when you want to work, but cannot be the worker you were before. Getting griped at for missing more days than the “average teacher” made to feel guilty, like I let them down and stayed home to play. When I have a flare, not only is my pain severe, but my hands shake and I fall easily, so yes I stay home. I have 2.5 years until I can retire, but not sure I can make that! Thank you for providing an honest look into our lives! I plan to share this with many people! Only one of my co-workers know I am a chronic pain patient. Please continue to write when you are able! You have a wonderful flow as a writer!

JaneF

I really can’t believe there isn’t a discussion yet. I must say, I’ve not read anything near as powerful as this; regarding the “Power of Pain”. I have CRPS, and I work, still blessed to have medication that keeps my pain levels down enough to push through. Many, many days it’s so very hard, but I guess I’m stubborn, and once I “give up” normal, then it’s possibly gone forever. I work through the pain, quietly, but trying to stay positive, just like these wonderful people. I do understand, completely, when you just have to STOP, not a matter of choice, but your body can only do so much. My heart goes out to you, Liza, for the beautiful, poignant letter, so eloquently written, with such heart and thought. My prayers for all the suffering that life hands us, but also remembering how blessed life can be.

Beverly DeVoll

Thank you for shining the light on we spoonies.

Anonymous

When I was diagnosed with fibro, a co-worker who at the time was not a senior member of the staff at the time, asked me in front of everyone, “Are you still going to be able to do your job?” I felt terribly vulnerable. She has targeted me since – saying that the work I do isn’t correct (when it is!). I second-guess myself because she accuses me when I’m not in front of the computer to check what she’s pointing out. She doesn’t just ask questions — she makes STATEMENTS that something is wrong and her tone is accusatory. Now she’s senior staff… and I’ve been at this job for over 10 years, nearly 15. What keeps me here is fear that I may not be able to learn something new or that another employer wouldn’t allow me the doctor visit time. I used 1 1/2 weeks of my 4 weeks vacation last year and my boss acted like I might be close to having used up all my time. I had used sick time for my doctor’s appointments, made up a lot of time by staying late or taking a short lunch and I showed up at work when I was sick.

I feel very vulnerable and besides doctors who jump to conclusions and screw up my care (I was accused of being addicted to prednisone by an allergist when I used it 4 times a year for respiratory infections or allergy exposures) but work — well, work is probably the 2nd most common cause for me going through depression at times. I’m pushing myself and I can work SO hard but I’ll never be more than “the sick one.”

One senior staff member once blurted out, “Have you ever NOT been sickly?”

Anonymous

I’m 39 years old and I work in an office on the computer a lot.

Several years ago, a pain clinic was going to put me in their “fibromyalgia program.” It required me to commit to 4 hour classes 3 days a week for I don’t remember how many weeks. I was fairly new to the diagnosis. The pain clinic would NOT treat me any other way… No individualized doctor visits until after I completed their program. It was a huge burden… and I said I couldn’t do that.

I work for a small employer so I’m NOT protected by the ADA (everybody assumes that you are protected, but I think the cut off is 15 employees or less… something like that). I did bring up the issue with my boss and got the side-eye. I was pretty crushed. I’m really angry that the pain clinic would force me into a program like that. The pain clinic told me I “could” come back (as if they were doing me a favor). Yeah, someday when I want to call lots of attention to my condition or when I’m too sick to work anymore and may not be able to afford health insurance to allow me to come back anyhow.

I found care through a physiatrist and it’s working for me. I’m afraid that these opioid regulations may force her to send me back to the pain clinic eventually. When your insurance limits you to dealing with the same hospital system, you don’t have many choices! I also don’t drive, even if that would help widen my options (which it won’t, because the hospital system pretty much centralizes care to the clinic I tried to go to).

My sleep specialist says I may have narcolepsy and offered to write me a note for work that I may need to take naps. I have genetic markers for narcolepsy and another relative was diagnosed with sleep paralysis & narcolepsy so I may have it, too. I declined the script, and actually felt a bit mortified. I hope that I never need accomodation like that.

(cont’d below)

Rick Klingenstein

My name is Rick and I am a master collision tech.. I’ve been in pain management for 9 years after a drunk driver hit me from behind while riding my Harley Davidson motorcycle.. Without Extended release morphine and instant oxycodone I wouldn’t be able to work and help support my family.. I was sidelined by my doctors fire six years but was tired of never having money for anything. But even with the medications I struggle so that should give one an idea of how much daily round the clock pain I suffer.. Pain never never ever takes a day off in my life!

cindy grossman

I don’t know how these people do it. I’ve been on disability for 10 years due to pelvic pain syndrome, and w/o it, I’d simply be destitute. I could not work.I also have fibromyalgia and lingering pain from injuries that never healed. I don’t heal from anything fully.

I was a lawyer and my brain doesn’t function the way it used to. When I read, I see words that aren’t there, and I can’t spell properly anymore. I attribute these cognitive issues to a combination of opioids and constant horrible pain for so long. But whatever the cause, I can’t be trusted to do anything important. Plus my memory is getting worse all the time.

Physically, I can’t do much even w/ the opioids — and I don’t take as much percocet as I’d like b/c my pain doc cut my Rx back by a third a few months ago due to the CDC Guidelines.

I change pillow cases instead of sheets, b/c changing my sheets is such an ordeal — plus generates extra laundry. I eat too many frozen dinners and too much cereal b/c even if I manage to cook something simple, I can’t clean it up. Two weeks ago, I threw some frozen fish and frozen veggies in some pyrexes to bake, and the pyrexes need scrubbing and I haven’t been able to do it yet. I did a few errands last Sunday, and after awhile, was hunched over in agony, and haven’t moved since. I had to cancel a few medical appts too.

I can’t sit up straight for any length of time, and cant’ stand still for more than a very few minutes w/o needing to bend over to alleviate the pain.

I’m tired all the time, and need to sleep 12 hours a day, too.

My excellent disability insurance from my last job, plus a private policy I had, keep me afloat and housed and fed. But, even w/o it, I can’t imagine that I could hold down any job at all.

So, I am in total awe of anyone who manages to hold down any type of job, take care of kids, and basically do anything at all.

Joanna

Per FMLA, your employer legally cannot ask the specific diagnosis when you request accommodations, just the doctor signing off on whatever task the employee cannot do or adaptation needed (e.g. cannot stand for extended periods, cannot lift more than X lbs, need sporadic days off when not feeling well, etc.)

kelly

“Many of these employees work hard and work even harder so that no one knows that they are sick.”
Wow, did that sentence resonate! I still remember when I got “busted” –I worked in basic research, meaning I did all the laboratory & experimental work that leads to scientific/medical papers. I had an experiment that I just had to go to the lab & do the next step. I was in blinding pain from a migraine; standing at a lab bench wearing 2 pairs of sunglasses is not a way to remain inconspicuous. People asked; I explained. Some (who’d had migraines, or family members with them) were very understanding. The rest either accused me of having a hangover (I’ve never been a drinker) or was just lying about it. They even accused me of being melodramatic when I’d suddenly bolt to the restroom & throw up –or acting as if I were throwing up.

Possibly the most annoying thing was, I always felt guilty about having to take days off work, like having a brain stem defect somehow translates to having a character defect.

Now, many decades past, I have a whole carnival of pain issues to keep things interesting. Of course, in the current climate of hysteria, no matter what pain source is flaring, my doctor invariably says “people with that condition shouldn’t take opioids!” (which yes, are the only thing that work, & I’ve tried EVERYTHING).

Barbara Snow

You will not be able to get disability without a lawyer. They can only charge so much and they will take it out of your back pay. Just Google disability lawyers and find one. Without one they will just keep denying you.

dis may

The issue regarding inability to work when pain is not treated is precisely the reason pain is not treated. I have noted in numerous ‘replies’ that, while doing my masters in social policy I was interested in 1. Policies related to workplace organization in the United States and 2. Policy development in relation to substances of abuse. I was surprised to learn that opiates were criminalized in 1914 with the Harrison Act of TREASURY. The resources I located that made the most sense out of this policy coming out of treasury connected the law with the State of California in which it was enacted. California was experiencing an influx of immigrants from Asia who then competed for jobs in the nearly exclusively white male work place. Opiates were in a little household remedy: laudanum. Not causing any trouble. Asians could be associated with smoking opium. This did not impair workplace performance any more than tobacco smoking did. But it was a way to isolate this population, get them out of the workplace. Florida, impressed, followed suit the following year when treasury criminalized cocaine in association with immigrants of color from the Caribbean. Again, a device for singling out a marginalized group and keeping them out of work.
Prescription pain medication is predominantly used by two groups: aging white females and lower SES folks. How great is it! Two for one. I predicted that people untreated for pain would be unable to move, and that the following leading causes of death secondary to behavior would shut. Top 3 behaviors precipitating death were 1. tobacco product use; 2. inactivity; 3. alcohol product use. The prediction already proved correct: Inactivity is now taking the lead. So, not only are people in chronic pain unable to work, they are unable to move. But they sure can die. Today the US no longer needs treasury to drive the legislation. CDC happy to oblige. And I have certainly noticed the boom town mentality in addiction treatment. Blame the victim.

Would Lisa Zoellick like to become a disability advocate? The reason I ask, is that as traditional workplaces continue shutting down and humans who were once paid to act like robots get replaced by real robots, the emerging economy focuses on products and services that require non-robot characteristics, such as Empathy. There are jobs in social media marketing that can literally be done from bed at a home office. Coercing employers with litigation has proven counterproductive. Many 20th Century-style businesses are unionized; with detailed work rules written by armies of lawyers that describe every robot-like task that is expected of each worker. People who frequently get too weak to perform those jobs on command, age out and retire, or exit the business as “disabled”.

The supervisors comments in Lisa’s Paragraph 7 were particularly enlightening. Although we have the llegal right to reasonable accommodation of a disability, we cannot demand unlimited accommodation. An airline pilot with glaucoma will at some point be unable to see well enough to safely work in the cockpit and will have to retire. But could that retired pilot have a second career as a travel blogger? Absolutely!

Disability advocacy requires skills at adaptation. Some employers are so hopelessly mired in 20th Century thinking, that it’s easier to wait for them to fail from obsolescence than it is to get them to adapt to hiring people with disabilities.

Businesses whose managers recognize that Spoonies are customers, will take an entirely different view of disability. Hiring someone who can inform them about what life is like for folks who get weak and need time to regain our strength, will be viewed as valuable.

The challenge is to pair employers up, with workers whose disability can be helpful to the business in some way, and to do it by consensus instead of litigation.

Very thought provoking subject, Lisa!

Good story Liza, one in which I can relate. I loved working. When my nine-to-five got to be too much, I decided I would open my own cleaning/ decorating business. It began to thrive, so did I. I could make my own hours and with one set price per customer, could take as long as needed. My work was done with perfectionism. A few years after starting my business my ankle began to swell, I would either have to work in my socks or bare feet. I wore an ankle, knee and back brace. When people asked, I told them it was from an old car wreck injury. A few years later, two of my major client’s began asking if I was okay. I said yes, I’m fine. The more time passed they realized I wasn’t, so did I. My time spent working doubled. After I got home from work, the day after it was all I could do to walk. Two of my dearest clients told me they thought I should apply for disability. As much as they loved my performance, they said they could tell it was killing me. “Even with a smile on your face, we can see the pain in your eyes.” I thought I’d covered it well, apparently not. I would continue to work several more months and it got to the point where I couldn’t. I hesitantly applied for disability, receiving it the first time. I was thankful, but felt like a failure. As time passed I began to make jewelry, something to occupy my time. Shockingly it turned into a small business. As things were going well, I stopped completely to take care of my family. I knew I was doing great things for them although I still felt like a failure. Now that most of them are gone I’ve decided I want to do stained glass. I’m pretty much alone these days and think this will be wonderful. My point is, we can only do what is humanly possible. I didn’t tell my body to act this way, it chose to. Through it all I’ve learned we can only take one day at a time and pray for the very best, knowing that in God’s eyes we are not failures. Liza I’ve prayed you will get your disability. Take care and keep strong!