One thing that I’d like to include in the second book is a section on obstacles involved in maintaining a job, changing jobs, or making the decision not to work.

Please comment below with your story, especially if you have first hand experience with this issue that can help others. If you would like your story or advice published, say so in the comments section or send me an email at yessington_at_itsnotjustlyme_dot_com.

Having Lyme, Holding a Job

What type of job accommodates my unpredictable health?

This question complicates an already convoluted decision, but it’s a legitimate question to ask when living with Lyme Disease. And it makes this section of the book much more difficult for me to write, because I want to accommodate everyone. Some of us are just starting university, others are quickly realising their career paths are too stressful, yet others have been working for 25 years and have to consider the complications with leaving or changing positions. Then of course, some of us are Yolanda Foster and don’t need to ask any of these questions (no disrespect – Lyme is a full time job on its own, Yolanda).

I must admit, I feel self-conscious writing about this. I don’t have the financial burden that a lot of people have simply because I don’t pay rent (currently) or have kids to support (yet). I don’t work full time, I don’t take expensive prescription drugs, and I am not responsible for anyone but myself. I am in a place in my life where I am attempting to be an entrepreneur, researching and writing for full days with no hourly wage, but with as much time as I need to prepare meals, exercise and de-stress. I am living off of savings and modest donations from consultations I provide to Lyme patients. My post-diagnosis dream is to be a Lyme advocate, provide health services that are affordable and effective, and constantly upgrade my credibility with research and relevant certifications. I am in the “test phase” of this path, unsure of how it will turn out. Full disclosure: this subject is goes beyond expertise.
Luckily, I can rely on the advice of others far wiser than me. Rosalind Joffe, MEd, and Joan Friedlander wrote an amazing book called “Women, Work, and Autoimmune Disease: Keep Working, Girlfriend!” that I highly recommend if you are thinking of retiring early to accommodate your illness. I’m going to reference that book a ton in what’s to come.

To Work Or Not To Work

I really don’t want to write about this, in all honesty. What do I know about your financial hardships? Nothing. I don’t want to trivialize or pigeon-hole anyone’s lives.

I’d love to just focus on your ideal options, but in reality, most people living with an Autoimmune Disease are not Yolanda Foster, and a lot of them live under the poverty line. No matter how desperately they need downtime to heal, they have to work long hours.

You may need to work for the obvious reason that you need money. A stable income, and maybe even health insurance, keep us fed, sheltered and medically protected.

Excuse my use of the word, but, ideally, I think working enough to support yourself (and your children), but not so laboriously or often that you relapse to the point of needing to use costly measures to recover, is the working-sweet spot.

Of course, circumstances are different for everyone. Sometimes our jobs, the ones we’re highly qualified for and experienced in, are more detrimental to us than they are rewarding. Laborious, stressful, soul-crushing, life-consuming jobs provide a level of stress that make relapsing easy. Sometimes our jobs are mostly great, sometimes we love our jobs, but we’ve become disabled in some way that makes the tasks involved in them difficult.

A Note To Those Who Are Thinking Of Quitting

I’m going to suggest a few reasons to stay – if not in your position – than in the workforce.

Deciding to quit a job might provide a sense of relief, but doing zilch can become depressing fast. On top of that, it makes it harder to rejoin the workforce and can make us feel more isolated from our working friends and family.

Joffe and Friedlander, authors of “Women, Work, and Autoimmune Disease” make a good case to continue working. They mention Alexa Stuifbergen’s theory as proposed in the article “Conservation of Resources: A New Attempt at Conceptualizing Stress” by S.E. Hobfoll. I can’t say it any better: “This theory proposes that various factors— including, but not limited to, money, knowledge, social support, and health— contribute to a person’s well-being. The presence of one resource is linked to the existence of others; similarly, the lack of one resource is linked to the absence of others.” Being sick already leaves us vulnerable to what Joffe and Friedlander dub “downward spirals.” Being sick and unemployed leaves us with not one, but two less resources for a healthy perception of life.

Getting up to go to work can be a drag, but it forces us to use our days purposefully. Without that nudge, a lot of us make take it too easy, eventually becoming isolated. Think of it like this: personal fitness trainers are typically fit. They surround themselves with exercise machinery all day, so staying active is at their fingertips. For the rest of us, we need serious will power to maintain the level of fitness a personal trainer maintains. I’m – sort of – implying that having a job makes us keep moving, and that not having a job gives us a lot of opportunity to sit around and atrophy. If you can afford to quit working and do not feel isolated, then you are one of the lucky few.

I also think we can all derive strength and pleasure from work. I have definitely had days where I am tired and in pain and write-off doing any work. But come to think of it, I feel better – mentally and physically – when I do at least a few hours of research or writing every day, eight days a week. When I baby myself, I feel like a baby. When I tough it out, I feel tough.

But Lyme Is Immobilizing

A valid reason to quit is that you cannot keep up with your job. It’s stressful trying to hold down a job when you have a fever half the time, when you have an important meeting but can’t think straight due to your inflammation and poor sleep quality, or when your antibiotics are causing blatant gastrointestinal distress and the thought of walking to work cause’s knots in your already mangled guts.

“This becomes even more confusing,” Joffe and Friedlander write, “when you felt fine working on a project 15 hours a day for 3 weeks running, but a few months later, you get a migraine after just two late-night meetings.”

After coping with Lyme for a few years, I’ve learned the hard way what to expect from my health. For me, I’ve learned that I can handle a lot, except when I’m mentally and physically stressed. I can predict that I will fail in health and in work if I cannot get adequate sleep, or catch the flu. And if I do get the flu, I can predict that I will need extra recovery time or else I will have a Lyme relapse. I can predict that if I don’t feel appreciated at work, or that if I’m surrounded by a hostile work environment, I will start getting stressed out. And I already know that I’m susceptible to a relapse if I’m chronically stressed.

Can you use your experiences to predict what you can and cannot handle at your job?

Here are a few more questions I’d like you to ask yourself: Is there any way you can make your work schedule more flexible? Is there any way to make your work flow more balanced? What course of action should you take when you cannot physically or mentally keep up with your work load?

You May Not Be Aware Of The Autonomy You Have At Work

In the United States, there are two federal laws that protect the rights of people with illnesses: the ADA (Americans with Disabilities Act) and the FMLA (Family Medical Leave Act). If you haven’t taken advantage of these yet, it might be worth keeping your job and seeing if these provide enough relief for you to maintain a healthy work-Lyme balance.

You can take much-needed time off to heal with the FMLA. The FMLA allows up to 12 weeks of leave every year for recovery from an illness. This law only protects employees who have worked for their employers for over twelve months, and who work for employers with over fifty staff members.[i]

Thanks to the FMLA, you do not have to tell your employer what illness you have. If you need more than three days off, you usually just need a doctor’s note to disclose that you need time off for “medical reasons.”

You can ask for special treatment – to an extent – with the ADA. The ADA allows employees with disabilities – physical and mental – to ask for job accommodations. The United States Department of Labour states: “Accommodations may include specialized equipment, facility modifications, adjustments to work schedules or job duties, as well as a whole range of other creative solutions.[ii]

These laws are here to help you sustain your working life.

Quit The Job – Don’t Quit The Workforce

Maybe your job does not accommodate your disease one bit. Maybe your boss is unsupportive, or your industry is ruthless, inflexible, and unable to offer you long-term stability and flexibility. Most people need a good reason to change career paths – having Lyme Disease is a fine reason, I’d say! Don’t stay at a job that prevents you from ever reaching remission.

It’s possible to work and be healthy at the same time. If you cannot find the balance in your current job, I think you can find it elsewhere with some determination. Forget about an approach that isn’t working, or what you think you should be doing. Forget about your years of training, and ask yourself if your job and all you’ve invested into it will complement your future self. I heard once that a good relationship makes you feel happy, healthy, and makes you grow. I think the same applies for jobs. What can you do, and be happy, stimulated, and healthy while doing it? How can you use your expertise while enjoying flexibility that – let’s face it – you and your illness may require? Do you need additional training? How can you network and make it happen?

I’ve already reminded you that I’m not a doctor. Now let me add that I’m not an occupational psychologist. But I do believe – at least for me – that there are two ideal scenarios for us Lymies. One: you work for an empathetic employer and are part of a team that has your back in the sense that they are trained for the same job and can cover you if needed. Two: work for yourself.

Finding A New Dream

I had to let go of my dreams to work abroad. I was reluctant to admit I needed to re-evaluate my career goals. But after many attempts to move away, I realized it wasn’t worth it.

I have met other people with Lyme Disease who have, like me, pushed themselves into career pursuits that made them crash harder and longer every time. On top of the physical crash, they held on to the idea of themselves as a great *insert job title here* and that adds a level of shame and disappointment in oneself.

I skipped that part – the shame and disappointment in myself, that is. One day, I let go of my impossible dreams and found new dreams. I took a Darwinian approach and adapted. To those who hold on to dreams that have proven time and time again to negatively correlate with their health, I respectfully ask you: is there another way?

I came up with a new career path once I asked myself these questions:

What makes me happy?

What am I good at?

What does the world need?

How can I make money?

I think any ordinary Joe should ask these questions when pursuing a career. But dealing with an unpredictable illness I also asked myself: How can I accommodate my unpredictable illness?

lyme disease holding a job

I had taken a year off of work when I was sick – and I did this because I pushed myself to the ground (quite literally) pursuing dreams that never accommodated my health problems. Re-entering the workforce was nerve-racking and foreign.

Composed, I told my employers that I had Lyme Disease– even “using” it as a reason that I had the zest for life that was required for my job. One of my employers, having health issues himself, was okay with this – I think it helped me get the job! Honestly, I couldn’t imagine working anywhere where I felt uncomfortable disclosing my illness. So that was a relief. On top of that, I worked with a team of healthy, warm, open adults that I disclosed my illness to, as well. We all had the same job description, so if I needed a sick day, operations still ran smoothly. I had a lot of medical appointments during the day, so I worked 5:30 until close. At the rock-climbing gym, there was no sitting, no rest, just constant customer service, safety orientations, fall demonstrations, and running around. If I didn’t love the energy in the gym I would have relapsed big time. But I did love the energy. And I didn’t relapse.

I was making almost minimum wage. I did not have medical coverage. For me, that’s an okay trade-off for a maintained remission, an acceptance from my team of what I could offer and when, and the health, happiness and stimulation provided by my work circumstances. I could have made more elsewhere, but if I can’t be reliable at my job, I’d probably get fired anyways. Not to mention that if my workplace left me vulnerable to constant relapses, I could be spending $30,000 and up on treatments.

I don’t think having Lyme will scare away every employer – maybe just the wrong ones. This is why I personally like disclosing it to employers even though I am not legally obligated to. If I emphasize my dedication to the job, and take a composed and positive spin on what I have gained from my battles with an illness, then I’m confident that I can find another gig whenever I want. Not any gig – but a good one  for me and my baggage.

Now that I am working for myself, I enjoy ultimate flexibility at the cost of a stable paycheck. Work does not get done if I take a “sick day,” I have to juggle multiple job descriptions and learn the skills that go along with all of them, it’s a slow process, it consumes my days and sometimes my nights, and it takes a level of self-discipline that is hard enough for a healthy person to uphold. On the upside, I get to work at home where no one has control of my schedule, my boss (me) is accommodating, sometimes my work days are pretty short, and I am making money doing something I enjoy and know well (getting to and staying in remission). It’s a slow start, and I do need a part-time job for additional income, but my long term goals are steering me in a path where I will not need to work for someone else, unless I wish to.

If you have a service, product or information to provide, could you do it as your own employer?

If You Really Can’t Work

There are federal programs that can help. Social Security compensates people with medical conditions that disallow them from working for at least a year. The definition of a “disability” is pretty strict under Social Security, so some people who apply may be turned down.

According to the Social Security Administration, you must meet two different earnings tests to get compensation: 1. A recent work test, based on your age at the time you became disabled; and 2. A duration of work test to show that you worked long enough under Social Security. The amount you can be compensated, to my understanding, takes into consideration how long you’ve worked, and how much you’ve paid in payroll taxes.[iii]

Supplemental Security Income (SSI) is a Federal income supplement program funded by general tax revenues. If you have little or no income, this income is minimal, providing enough for “food, clothing, and shelter.[iv]

You can find out if you’re eligible for SSI at http://ssabest.benefits.gov/. This is only for Americans.

Working Trumps Government Assistance

I don’t recommend going on disability – or staying on it for too long. I think having Lyme is, on its own, reason to work, to have high standards for your work and your wage, and to make enough to cover your high maintenance ass.

Work is tough, but it pushes us to wake up and do something purposeful. Balancing our life, knowing when to slow down at work and being able to predict what you can and cannot reliably do seems, to me, like an attainable goal for many of us.

What did you think of this article? This subject is new to me and your comments are appreciated.

[i] http://www.dol.gov/general/topic/disability/jobaccommodations

[ii] http://www.dol.gov/general/topic/disability/jobaccommodations

[iii] https://www.ssa.gov/pubs/EN-05-10029.pdf

[iv] https://www.ssa.gov/pubs/EN-05-10029.pdf

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5 thoughts on “Having Lyme, Holding a Job”

  1. I’m living in Australia..and having the same struggle, so I was interested to come across your post… Had my first shift (only 3 hours) after 7 months off work ill with Lyme. ..and I was a mess afterwards. It was a personal achievement to even stand for 3 hours. I work in a high volume customer service environment and my poor brain was so overwhelmed by all the stimuli. and my vision was affected. Even chatting to customers and staff was too much for me. I’m really not sure if I will cope, maybe it will get easier..time will tell..uncertainty abounds.

    1. Madi, nerves could have play a roll since it was your first day back in so long. Or this job isn’t the one for you (right now). If you can keep your shifts to a minimum (1-2 days a week to start) I think you’d get that second and third feel of it, and how your health is holding up without diving in and crashing.

  2. Many people don’t have support though. I think disability allows you to try to work, or to work a few shifts — that without disability, would not cover rent let alone food, rent, gas, car, etc.

    I agree we should work if we can, but most people I know with Lyme cannot handle full time work.

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