by Jenny Lelwica Buttacio
A diagnosis of chronic Lyme disease (or any other chronic illness) can rattle the stability and security of every aspect of your life — including your ability to work and maintain a job.
The myriad symptoms you may experience, such as chronic pain, profound fatigue, sleep issues, and brain fog, can make the tasks you used to breeze through with ease now seem like monumental efforts. On top of that, the pressure of pushing yourself to your limits can cause your Lyme symptoms to escalate, and you might begin to wonder if you’re setting yourself up for a more serious health crisis in the future.
Between caring for your family, paying bills, the need for health insurance, and affording treatment costs, you might not be in a position to leave your job to focus solely on recovery. Many chronically ill patients need to continue their employment, but figuring out your options and the rights that you have to make working feasible can be tricky to navigate.
To make the most of working with Lyme disease, we’ve gathered six tips — a mix of patient advice and resources — to help you find the delicate balance between managing your job and healing your body.
1. Don’t Be Afraid to Ask for Reasonable Accommodations.
If you feel you could sustain your job with a few adjustments to your schedule, work environment, office accessibility, or something else deemed as “reasonable” or plausible, you have a right to request it from your employer under the Americans with Disabilities Act (ADA).
The goal of the ADA guidelines is to allow people with disabilities and chronic illnesses to participate in employment opportunities regardless of whether the job is full-time, part-time, or a probationary period. Areas covered by the ADA include:
- Ensuring the building facilities are accessible
- Restructuring responsibilities to add new tasks, reallocating previous tasks, or redistributing certain functions of the job
- Modified work schedules
- Providing equipment that assists with your job duties
- Changing or modifying testing methods, training manuals, or company policies
- Providing an employee with reading devices or interpreters
- Transferring to another job that is more accommodating to your disabilities or chronic illnesses
Examples of some of the accommodations that you could request to help you perform your job duties include:
- Adjusting your work hours to favor the times when you are the most productive
- Taking additional rest breaks throughout the day
- Incorporating work-from-home days each week
- Asking for a more comfortable chair or modifying your workspace to reduce pain
- Requesting a closer parking spot to shorten the distance you need to walk to the building
Although asking for accommodations can be a difficult conversation with your employer, it could be the difference between allowing you to remain working in an environment that’s more conducive to healing rather than wearing yourself out in a stressful environment.
2. Consider Whether It’s Beneficial to Tell Your Employer or Colleagues About Your Illness.
The choice to disclose your health condition is up to you. If you feel your symptoms are interfering with your ability to perform your job, you may find it’s a wise decision to keep your boss in the loop.
When it comes to your co-workers, you might be more reluctant to share what you’re going through with them — especially if you’re not close with them. Again, it’s up to your discretion.
For Teresa C., an event coordinator and tour manager for a tribute band, telling her boss and co-workers about her Lyme disease has proven to be beneficial to her. “They know,” she says. “I need for them to understand why I may miss work or periodically need to take a break.”
Those periodic rest breaks help Teresa cope when she experiences an increase in symptoms or a more significant Lyme flare, and they allow her to continue to receive a steady paycheck. “It’s not easy, but you have to be willing to fight,” she says. “I have to try and keep a positive attitude and not focus on the illness all the time.”
No matter who you choose to tell, neither option is right or wrong. Some people, like Teresa, might be more outspoken about their battle with Lyme disease, while others are more private about their illness. Ultimately, you must do what makes you feel most comfortable and benefits your situation most.
3. Review Your Company’s Family Medical Leave Act (FMLA).
Many people are unaware that they qualify for medical leave under FMLA when they experience a serious illness. Generally, the maximum time FMLA allows is 12 weeks, which you can take all at once or intermittently over 12 months.
To be eligible to take medical leave, you must work for a “covered employer,” have held employment for a minimum of 12 months, and worked at least 1250 hours (an average of 24 hours/week), states the Employee’s Guide to the Family and Medical Leave Act.
Under FMLA, covered employers are defined as:
- Private companies with more than 50 employees
- Government agencies
- Public school systems
If you work for a private company with less than 50 employees, you could still be eligible for medical leave, but the requirements would fall under state family and medical leave laws instead of the federal government. Your human resources department should be able to provide you with more detailed information.
Whether you need time to rest, attend doctors’ appointments, or begin a new treatment, FMLA can be a critical tool to help you keep your job and remain in good standing with your boss, especially if you anticipate missing a day here or there, or you are too sick to work.
4. Communicate with Your Boss or Clients Before There’s a Problem.
Building a career with a chronic illness requires diligence, patience, and flexibility, says Alyssa Knapp, owner and operator of the patient-centric resource website, Lyme Advise, and digital content and marketing company, Legacy Medical Marketing.
For Knapp, a typical day includes phone calls, writing, designing, organizing content and calendars, working with freelancers, managing projects, and helping other businesses reach their digital goals. “Everything I do tends to need high levels of mental focus and mental stamina, rather than physical demands,” Knapp says.
Before she takes on a new client, Knapp makes sure they understand she’s dealing with Lyme disease and sets realistic expectations. While she works hard to ensure her clients’ schedules and deadlines are met, there are times when Lyme flare-ups or treatments get in the way.
If she has to change a deadline, Knapp lets her clients know well in advance. “Communication is key, and it applies to any job you might do while dealing with Lyme disease,” she emphasizes. In other words, if you’re running behind on a work-related project, keep your boss or clients informed before panic ensues or a problem arises.
Though you might be dealing with an onslaught of symptoms, notifying others about a schedule change shows them that you care about your job, and they are still a priority to you.
5. Create a Health Toolkit to Manage Symptoms.
Sometimes, you feel unwell as soon as you get out of bed in the morning. Other times, a flare-up comes on suddenly, without any advanced warning, causing you to question whether or not you can make it through the rest of a hectic day. Lyme disease is a reality in your daily life, and the symptoms don’t stop just because you’re at work.
So what can you do to ease symptoms and avoid overtaxing yourself? Consider creating a health toolkit that you keep at your office to get you through the rough patches.
“Some days, I use a chair back massager between appointments. It has a heat option and can target specific areas, so this helps relax tight muscles and keeps detox pathways open,” says Julie Parker, a Licensed Professional Counselor in private practice.
To set the stage for a less stimulating environment, Parker keeps her office lights dim, which helps to mitigate the onset of headaches. Also, she stocks her health toolkit with calming products and healing beverages.
“I keep relaxing essential oils, CBD oil, and detox teas on hand to help as much as possible,” she says, though, some days are still a matter of willpower or knowing when her body has reached its max capacity.
6. Prioritize Sleep.
If you’re unable to get quality sleep each night, you most assuredly will be dragging yourself through the next day. Plus, sleep is crucial to restore your body, increase energy levels, enhance immune function, and improve cognition. If you have Lyme disease, you should prioritize your time to allow for eight hours of sleep, suggests Dr. Bills Rawls, Medical Director of RawlsMD and Vital Plan.
“Overactivity of the sympathetic nervous system is at the very core of your inability to fall or stay asleep,” says Dr. Rawls, whose own battle with chronic Lyme disease has impaired his sleep. “During a stressful workday, the brain stimulates the secretion of adrenaline from the adrenal glands. Adrenaline primes the body for confrontation or a quick getaway by increasing alertness and quickening reflexes. If your adrenaline levels are high, the urge to sleep will also be suppressed.”
How can you increase your chances of getting some shut-eye? Herbal supplements and other natural therapies help bring on sleep by balancing neurotransmitters and hormones disrupted by sympathetic overactivity, explains Dr. Rawls. Here are the ones he recommends the most:
This adaptogenic herb promotes calm without causing sedation. Ashwagandha works by normalizing adrenal functions, including the production of both adrenaline and cortisol.
An amino acid found in green tea, l-theanine counteracts excitatory neurotransmitters in the brain and restores balance.
3. Tart Cherry Extract
Tart cherries are a natural source of trace melatonin, and they provide potent antioxidants to reduce inflammation. A low dose of melatonin at night can be beneficial for complementing your natural melatonin levels, which may be suppressed by artificial light and chronic illness.
4. Magnesium Glycinate
A natural muscle relaxant, magnesium plays a crucial role in several processes in the body. Magnesium glycinate, in particular, is the best-absorbed form of magnesium and has the lowest incidence of loose stools. Glycinate acts as a calming agent, too.
5. CBD Oil
If your sleep is hampered by pain or inflammation, full-spectrum CBD oil from hemp may be an excellent choice to help you get restful sleep. CBD oil is also beneficial for relieving anxiety and reducing the sympathetic overactivity, which can keep you wide-eyed at night.
It can be a balancing act to tackle a job while battling Lyme disease, to say the least. But with trial and error and some practical strategies, you’ll learn to work differently and listen to the signals your body might be sending you to take a break and rest.
“Know that having a chronic illness doesn’t mean you’re incapable. It simply means you have to work a bit differently now,” says Knapp. “Find or create work that is meaningful to you. Know it’s going to be really, really, really hard some days, but if you are doing something you love, the reward is worth it.”