Learn how to navigate the challenges of working with Lyme disease, from rights and accommodations to disclosure and disability options. Find support and resources for managing your career while living with chronic illness.
Lyme and other tick-borne disease can be very serious, especially when not diagnosed and treated early. Many patients suffer physical, neurological, and psychological symptoms as they wait months or even years to be diagnosed. They often experience misdiagnosis and the invalidation that comes with it.
Along with the physical and emotional upheaval of tick-borne disease, there is the stress of: How do I continue working while I’m sick? What do I tell my employer? What if I’m too sick to work? How do I support myself and my family, and pay all these medical bills?
I know this gnawing anxiety all too well, because I lived it. Bitten by a tick at 19, I wasn’t accurately diagnosed with Lyme disease, babesiosis, and ehrlichiosis, as well as chronic active Epstein Barr virus, until my mid-twenties. I had only been out of college for two years when I suddenly became too sick to work or care for myself. I was in between jobs, having decided to give up teaching high school English and Journalism to fulfill a lifelong dream of becoming a ski instructor in my beloved Rocky Mountains. Two months before I was scheduled to start that job, I was bedridden.
With my plan shattered, I found myself with very little savings, expensive health insurance carrying over from teaching, and mounting living expenses that I suddenly could no longer pay. Barely able to make myself meals or bathe, let alone seek alternate employment, I had no choice but to move back with family. I relinquished my independence along with my health, which continued to slip away as I desperately sought an answer for why I was so sick.
Despite the turmoil, I was lucky because I was able to turn to family for help. Not everyone can do that. Lyme and other chronic illness patients face legitimate fears of unemployment, homelessness, and bankruptcy. Luckily, help is available. The Global Lyme Alliance offers a list of many different financial resources: https://www.globallymealliance.org/lyme-patient-support/financial-assistance/.
What if you are working when you get Lyme, but are unable to do your job for a short or long period of time? What if Lyme alters your life in such a way that you need to shift career paths? Here are some lessons I have learned along the way.
Your rights
Whether you have a relatively simple case of Lyme that clears with a few weeks of antibiotics or a persistent case that impacts you long-term, your symptoms will likely disrupt your ability to work for some period. You may be able to take sick time if your case is short and you have good benefits. When you come back to work, or if you don’t take time off, you might find that you need certain accommodations to be able to work well while living with Lyme disease. Maybe you need a flexible schedule that allows you to work from home, or maybe you need different tasks that don’t cause your symptoms to flare. The Americans with Disabilities Act (ADA) requires employers to make reasonable accommodations for people with disabilities (defined as a “physical or mental impairment that substantially limits one or more major activities.”) If Lyme or other tick-borne disease substantially limits your ability to work, you have the right to ask your employer for reasonable accommodations.
Other resources that might offer more information on your rights and accommodations are the Equal Employment Opportunity Commission (EEOC) and the Job Accommodation Network (a division of the U.S. Department of Labor).[i]
Disclosure
You may be wondering if it would help or hurt to disclose your Lyme disease diagnosis to your employer or co-workers. On the one hand, you might get sympathy and understanding, especially if someone knows the ins and outs of Lyme disease. On the other hand, you might get dismissed with a comment like, “doesn’t everyone get over Lyme? My sister had it and was fine.” You might be afraid of being judged.
When I got well enough to dip back into the working world as an Editorial Assistant for a magazine, I didn’t tell my supervisor about my chronic Lyme disease because I didn’t want her to think I wasn’t capable of doing my job. This became a problem when I suffered a relapse while working for the magazine. When I finally did disclose my health condition, I learned that my supervisor had known all along. She’d read one of my articles about my experience, and when I “came clean” to her, she only said how impressed she was with all that I’d been able to do while living with such complex illness. She offered me time off and accommodations. I realized that the conversation would have caused me much less angst if I had just been open from the get-go.
Not every boss will be so understanding, though, so whether you disclose, and how much (you can always say you’re dealing with a medical condition without having to define it), depends on how you think your own place of employment might respond. I encourage you to talk to someone in human resources about your options.
For more on disclosure about Lyme disease in general—not just to employers, but also to friends, acquaintances, and potential romantic partners—see my blog post “On Disclosure: When and How Much to Tell”.
Disability and Time Off
Your human resources department can tell you the specific short and long-term disability options offered by your employer. There are also some federal mandates through the Family and Medical Leave Act (FMLA) that could apply to you as a Lyme patient or to a family member who is caring for you.i
When I was too sick to work for years on end, I applied for Social Security Disability Benefits (SSDI). Getting and then maintaining them was a long, hard battle, and I know that experience is all too common. It took several rounds of rejected applications and appeals—over the course of at least a year—and then a visit to a state-appointed doctor (who wrote my symptoms off as “all in my head”) and finally an appearance before a judge (who, thankfully, was well-versed in the complications of tick-borne illness) for me to earn SSDI. I received a check that covered a portion of my lost wages, and I received a monthly stipend that was helpful but not nearly enough to live on. As soon as I was well enough to start graduate school, attending class for a total of six hour a week, the government determined that I was also therefore able to work a 40-hour work week, and took away my benefits. Chronic Lyme patients deserve and need SSDI; just be prepared for an uphill battle to get it.
Reframing your abilities and changing career paths
One of the hardest lessons of my multi-year journey with chronic illness was accepting that it was coming with me into my future. My relapse taught me that I couldn’t dive back into work, or life, full-force. Rather than going back, I had to think about how to move forward in the context of chronic illness, so that I would stay in remission. This meant thinking about what type of work I could realistically do while pacing myself physically and neurologically, and leaving time for doctor’s appointments—and fun.
Before I returned to employment, I started by volunteering a few hours a week, just to make sure I could handle that schedule. Then I started writing some freelance articles about local events. That led to part-time writing work. After graduate school, I was able to start teaching creative writing (at a time of day that worked for me), eventually adding more classes, and eventually adding other part-time writing gigs, including my weekly GLA column. I had to think outside the box on what type of employment I could do and when, knowing my needs don’t allow me to work a typical 9-5 schedule. It hasn’t been easy, but I have managed to piece together multiple types of employment that I enjoy and that work well for me, rather than going back to one full-time job. And, since I teach Writing to Heal and write about Lyme disease, I have built-in understanding from employers.
The questions of employment with Lyme are tricky, and the answers aren’t the same for everyone. It’s important to know, though, that there are options, once you’re past your current full-time job, which is healing from Lyme to a degree that allows you to be able to work.
[i] https://lyme.health.harvard.edu/self-advocacy/#making-decisions-about-employment
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