Day 14 – My own prompt for today: ‘Talk about the issues involved in working (or not working) with an invisible illness. Is it possible to find a life-work balance with a chronic invisible illness?’
Note: These problems aren’t unique to people with invisible illnesses. However, this is my area of experience and the focus of this post.
Regardless of how long one has been ill, the issue of how to live (and work) with a chronic invisible illness is a difficult one. Depending on the onset of the illness, careers are cut short, life aspirations dramatically altered, and the lofty questions of ‘What can I do with my life?’ are often replaced by ones like ‘How can I get through the day?’
The natural progression of our lives from youth/student to adult/employee is a given in our society, and anyone who takes a non-standard route will understand implicitly that it’s difficult not to bow to expectation in our achievement-driven and often conformist world.
So what do you do when an invisible illness rears its head at some stage of your working life? How do you work when living with unseen but debilitating pain, or symptoms that interfere with the simple functions of living?
The answer is: it’s complicated. What are the options? The ones you might think of readily are working full-time, working part-time or not working. However, all of these options have great impacts on the quality of life of not only the person who is ill, but their family and loved ones. Anyone who considers that any of these options are easy does not have an appreciation of what it means to live with an invisible illness. With this article, I hope to give you an understanding of some of the issues that arise during the working life of an adult with an invisible illness.
Depression first visited me in 1988, in the last year of my undergraduate degree. The immediate impact was not only a strain on my relationships with my first boyfriend (soon to be husband) and family, but on my burgeoning career aspirations to be an astrophysicist. I knew instinctively that I would not be able to progress to my graduate degree as the stress would do irrevocable damage. This inability to progress into or complete important work-related studies is the first casualty of invisible illness.
In 1990, half-way through a one-year program to become a meteorologist (a program that I thought do-able even with depression), I fell acutely ill with food poisoning and my health never recovered. For some 5 months, working while living with severe nausea and abdominal pain was my daily routine. I’d get home at 6pm to my new husband and promptly go to bed – to sleep. After a few hours of sleep, I’d get up, eat something and go to sleep again. At the end of the program, I had to break my contract (to continue working after training) and stay at home to not work.
If I had lived alone, I would likely have found some way to continue working – at a cost. I had been raised with a strong work ethic, and the thought of applying for social assistance would not have occurred to me. The option of returning to my family in another state also would not have occurred to me. The time I spent talking to my parents on the phone or during brief visits only aggravated our joint realization that my former role as devoted and passive daughter was destroyed by illnesses they could neither see nor understand.
I was fortunate that I was no longer single, and that my husband was prepared to take on the role as family breadwinner. I’m not sure he was delighted, but it seemed neither of us had a choice. I remained very ill with my depression, and although I worked to keep our rented home immaculate inside and out, I knew I was not often a joy to come home to: a fact that my husband went so far as to verbalize one night. It broke my heart to not only be a ‘malingerer’ according to social mores, but to be the kind of spouse one was ‘stuck’ with (much like Mr. Rochester’s mad wife).
Early on, I made a decision that having a family was out of the question given my physical and mental health. It was yet another of those rites of passage that I had to relegate to the dustbin of dreams early on. For some people, the idea of family is not negotiable – it is a cherished dream – not only a rite of passage. Imagine if your invisible illness is infertility, and the possibility is taken away from you!
I hope you’re quickly getting the idea that living with an invisible illness is a process of subtraction… health, work/career and then family…
Imagine that you managed to make it to this stage. You’re in the beginnings of a successful career, and you’ve started a family. Say that, as is sometimes the case, you’re a single parent. Then you become catastrophically ill. No one can see anything wrong with you, but you deal with symptoms like migraines, chronic fatigue, constant pain, or any of a million other things that can go wrong with the body. But on the outside, you look fine. Everyone congratulates you that your life is going so well, but you have the inevitable realization that you don’t have the good health to live it anymore.
An invisible illness is devastating not only to the single parent, but the entire family. Many people with chronic illnesses manage to hold down a full-time job, but at a terrible cost to their health, and by extension, their family. Perhaps you explore the realms of social assistance, but early abuse by the assessment system or the realization that there is no way you could support your family, makes it quickly evident that you can’t go this way. Suppose, like me, you hadn’t even considered social assistance: it’s anathema to the way the world is supposed to work: grow up, work, have a family, retire…
For some people with an invisible illness, there is no choice. They’re out there working now. Imagine working a job for which you are eminently over-qualified, but it’s the only job that excuses the frequent unpaid sick leave on the bad days, or the constant visits to doctors (if you can afford those). Perhaps you get home to your children (luckily a friend or a family member picks the kids up from school, and perhaps starts dinner for you), and have to have sleep in order to function for work the next day, and your kids are virtually raising themselves. Maybe you work hard to be there for the kids, but the constant driving to be a good parent is driving you slowly into permanent disability.
Can you even imagine what it’s like to not have the energy after a day at work to cook dinner, to help with homework or tuck your child into bed? It’s a tragedy that’s unfolding every day, and yet the person at the centre of this sad drama, the person with invisible illness, is just told to work harder, smile more and just keep going because they look so well.
In my case, I had the luxury to choose not to work – for a time. After a year and a half of unemployment, the pressures were mounting. We had already moved to the outer suburbs into a cheaper rental, and my isolation increased, no longer being near even my adopted family (my husband’s aunt and her family). My family back home were more stridently echoing the party line that a return to work would be good for me, and given the success of a new treatment (Prozac), I was at least mentally well enough to work.
I was lucky to fall into a support scientist role that gave me a glimpse of my interrupted dreams, even though I spent many hours travelling to my psychiatrist, or to referrals to doctors who found that while showing some symptoms of a chronic inflammatory illness, there were no clear indicators and I would just have to learn to live with it.
While working was no doubt helpful to prevent my isolation, it was indeed no cure for my illness in the way others thought it would be. I spent two brief visits in a psych ward during those early years, and relapsed into an unremitting fatigue. Even though I could push myself and even ride my bicycle to work, I returned home to rest in bed most evenings. Although I struggled to also keep our rented home and garden going – having absorbed my mother’s mantra that a clean home is a happy home – it was perhaps inevitable that my marriage would fail under the pressure.
Remember the process of subtraction: health, work/career and then family…
I held that job from 1992 to 1999. It was at once some of the best and worst times of my life. My work mates became my family for a long time, although I rarely had the energy to see them outside of work. The ability to develop relationships, friendships and other important connections is another casualty of invisible illness.
In 1999, I had the great fortune to make a life with a new partner, and became an instant parent of two teenage daughters. I gladly became part of their lives and decided to return to school, given that the support would never be better. For the next six years I struggled to survive academically, help parent our daughters, and of course, keep an apartment so clean that you could eat dinner off the floor.
My illness was diagnosed in 2002 as Sjogren’s syndrome, but instead of delivering much needed answers, there was only more heartache as I struggled with the side effects of the treatments. Treatments that suited so many Sjogren’s sufferers seemed to have devastating impacts on my mood. Time and again, I had to abandon medications rather than skirt close to the old spectre of suicide, and indeed, I had to learn to live with it. People were still telling me how good I looked.
In 2005, I had to withdraw on disability. It was a devastating time. For the first time in my life, I allowed myself to be publicly recognized as disabled and no longer felt shocked by the stigma it implied. I also finally recognized that social assistance exists for a reason. Over the years I had been a part of and even moderated communities for people with various illnesses, and I had experienced second hand the toll wrought by applying for disability benefits. However, I was aware that given my mental state, there was no way I could navigate the system and win. I decided that it was time, despite the lack of income, to not work again.
Even while not working, I continued to hold the home together, and tried to help my wife get a home business off the ground, but we made a poor choice and instead just managed to use up a good chunk of our retirement savings. The crash of the late 2000s managed to get much of the rest.
Fortune smiled on me again, and in 2007 a dream job as a technical writer fell into my lap. At 41, I began to freelance for the first time, and discovered the importance of a job that worked with me, and not against me. I was able to work from home, telecommute by phone or web conference, and most importantly, work the hours that I could. Given that I was well compensated hourly for this work, the expectation was that I could turn in a full week and be quite comfortable. However, the reality is quite different.
As I sit here in 2012, I reflect that I’ve learned a lot of things about working (and not working) while chronically ill. I’ve learned by myself and from others the extreme sacrifices involved in working (or not working) while ill. After all, the price of total social isolation and poverty is not at all an enticing reason to not work, is it?
This brings me to the final question I’ve proposed. How does one find a work-life balance with an invisible illness? Any of you who have read Christine Miserandino’s wonderful ‘Spoon Theory’ (butyoudontlooksick.com) will know that the answer is anything but simple.
For most of us, we’re taught that time management is the answer: you delegate a segment of time for work, rest, recreation, family, spirituality and so on. But let’s say the time you’ve dedicated to recreation comes around and you’re too ill to play. Let’s say you’re too ill to visit your family or friends, or visit your church or community group when scheduled. What then?
Can you imagine a life where you have to subtract almost all of the living in exchange for survival? Imagine life and then subtract health, work/career, family, relationships/connection, play and growth.
Even as a freelancer, I’ve learned I can’t plan anything. I sometimes have to bail on the one hour a week I’m required to appear on the telephone. Office visits are few and far between. If I have a successful work week (for me success is usually a strict limit of 10-15 hours a week – a far cry from the young woman who pushed herself to work 40 hours or more) then I’m usually too tired to blog, create art or go for a walk. If I take time (like this blog challenge) to write, then I’m subtracting directly from the time I have available to work. This week, I’ve worked about 7 hours, even though I am potentially available to work around the clock (pain often keeps me up at night). This means that we continue to dig into our retirement savings to give me the luxury of blogging for a few hours each week. In terms of quality of life, it’s a temporary sacrifice: one I’m lucky my wife has stated is important.
If there is a possibility for finding balance in life with invisible illness, I’ve not yet found it. If you spend a handful of hours working (whether that work is a job, care-giving, advocacy or just surviving) often there’s little room for anything else. To me balance is constantly evolving: it requires very much that I stay in the moment, that I listen to my body and mind and recognize what’s possible. Balance often means maintaining a level of awareness and concentration the goes against the constant brain fog associated with my Sjogren’s.
The next time you notice a colleague at work who seems to spend a lot of time sick or going to doctor visits, instead of saying, “Well at least you look well!” why not say: “You do so well considering the challenges. Is there anything I can do to help make life easier?”
Ultimately, your understanding may be the only thing that helps them make it through another day.