We call Lyme a “rich man’s disease,” since proper treatment is costly.
Lyme disease treatment is affordable only to those with money to pay for health care out of pocket since insurance claims for Lyme are denied.
This is due to the lack of update in the Infectious Diseases Society of America’s (IDSA) guidelines that fail to reflect current research—which indicates Lyme bacteria persists after standard antibiotic treatment.
In order to go to the doctor, we must pay specialist-level pricing out of pocket. Physicians with experience in treating Lyme (a.k.a., Lyme-literate medical physicians) do not participate with health plans—in order to treat Lyme accurately and avoid conflict with the outdated insurance guidelines. Office visits, then, are not covered by insurance. On the off-chance we have out of network benefits on our insurance plan, the insurance typically applies the cost of the allowed amount (excluding Lyme diagnosis code claims) to our deductible.
And that’s just the beginning, before the costs of imaging, lab testing, and medications.
It’s no wonder why we must maintain employment with profound debilitations.
“Profound debilitations” would sound extreme, if not for four NIH-sponsored Lyme re-treatment trials documenting that Lyme patients’ pain was similar to those of post-surgery patients, fatigue was similar to that of patients with multiple sclerosis, and limitations in physical functioning were comparable with those of patients with congestive heart failure.
And top Duke University oncologist feels that Lyme is the infectious disease equivalent of cancer, with a compelling comparison between the two illnesses in terms of disease, stages, resistance, microenvironments, energy sources, inflammation, and cognitive dysfunction.
Sadly, the truth remains that Lyme is unheard of and misunderstood by many. Moreover, it’s an invisible illness, meaning most symptoms aren’t displayed externally. Simply put, no one looking at us knows we’re sick, including our employers. We get up, we show up, and we fake feeling up to tasks at hand. We do what we can (and sometimes more than we should) while we wait and hope for treatment to relieve our suffering. It’s not how we pictured living life, but we’re living the life we have.
We even end up convincing people around us that we’re well.
In some ways, it’s nice to have an area of your life where Lyme doesn’t take center stage. The only trouble is, there’s bound to be days when you have a flare in the workplace. But unlike when your coworker became visibly ill from a bout of food poisoning, your supervisor isn’t going to “see” and won’t tell you to go home early. So there at work you remain, dealing with physical limitations comparable to those of patients with congestive heart failure.
It’s up us to assess our functional limitations.
All of this is to emphasize that we have to watch out for ourselves as patients, particularly in the workplace. Deciding what is and isn’t okay for us (i.e., boundaries) at work is a step in advocating for our health. With our physician’s recommendations, we can determine our “functional limitations”—those things that, due to our severe physical or mental impairment, affect our ability to enter, engage in, or retain employment.
Understanding our functional limitations as Lyme patients helps us avoid undue health risks when performing the requirements of our jobs. It’s a proactive necessity during our recovery—as important as following a treatment protocol or having a CD57 count test.
Under the Americans with Disabilities Act (ADA), employees who work at a company with 15 or more employees can request “reasonable accommodations.” A reasonable accommodation is a modification or an adjustment to a job or the work environment that enables an employee with a disability to perform essential job functions. The accommodation enables an employee to perform job responsibilities at the same functional capacity as an employee without “functional limitations.”
We have to ask for what we need.
Employers are not required to provide accommodations if they are not aware of the need. While it’s daunting to think about revealing limitations due to disability to our employer, who seemingly assesses our worth based on our ability to perform, there are risks to not requesting accommodations. First, by pushing ourselves to perform required tasks in our job that are beyond our functional capacity, we risk irreparable and long-term damage to our health. Second, by not claiming functional limitations, we’re telling our employer that we can perform the required tasks of our jobs. Third, if our limitations begin to inhibit performance, we fail to meet expectations. This creates the risk of possible probation, demotion, or termination that may have otherwise been avoided by seeking an accommodation that would enable us to meet performance requirements. It’s better to request an accommodation before performance suffers because employers don’t have to rescind discipline that happened before they knew about your disability.
Fortunately, there are resources available to help us understand our rights and responsibilities.
If you’re considering talking to your employer about a reasonable accommodation, the Equal Employment Opportunity Commission’s (EEOC) Enforcement Guidance is a federal resource to help us better understand our rights (and responsibilities) as an employee with a disability.
According to the EEOC, you only have to let your employer know that you need an adjustment or change at work for a reason related to a medical condition. You can use “plain English” when you make your request; you don’t even need to mention the “ADA” or use the phrase “reasonable accommodation.” Most companies have in-house forms they’ll ask you and/or your physician to complete.
If you’re in need of an accommodation but aren’t sure what is reasonable for your Lyme-induced impairments, the Job Accommodation Network provides free consulting services for individuals with physical or intellectual limitations that affect employment. Their website includes an alphabetical listing of resources, including accommodation ideas for individuals with Lyme disease.
Since Lyme is an obscure condition to many, consider providing tangible documentation with your accommodation request.
Some things to consider including as you complete your employer’s paperwork to simplify the interactive process:
- A list of each physical, medical, mental, and/or psychological impairment.
- A list of your impairment in relation to the system of the body it relates to. Your employer will assess if your impairment substantially limits you in one or more major life activities, which include the operation of a major bodily function or body system such as:
- the neurological system;
- the musculoskeletal system;
- the special sense organs and respiratory organs,
- the cardiovascular system;
- the reproductive system;
- the digestive and genito-urinary systems;
- the hemic and lymphatic systems;
- the immunological systems;
- the skin;
- and the endocrine system.
- A copy of your job description or essential job functions, and a list of the functions that you require an accommodation to perform due to your functional limitations.
- Doctor’s notes outlining medical restrictions, or a letter of medical necessity from your physician. A physician may request an accommodation on your behalf. Often it’s beneficial if the physician includes your proposed accommodation ideas in the notes (or letter).
JAN provides several sample documents on their website, including a sample accommodation request assessment form, which can help you prepare for the overall information your employer will likely ask you for.
Remember that your functional capacity is considered in relation to the functional capacity of people without impairment in the general population. Your impairment doesn’t need to prevent you from performing a major life activity completely; you simply need to consider your abilities and limitations as if your Lyme symptoms are in an active state. Then assess what job functions you can’t perform when your symptoms are active and at their worst (like during a flare) without the effects of medication, supplies, mobility devices, assistive technology, learned behavioral modifications, or even reasonable accommodations.
As you talk with your employer, keep in mind that in addition to being reasonable an accommodation also must be “effective” in meeting the needs of the individual. An accommodation is effective when it enables you to perform the essential functions of your job or have equal access to the benefits of employment that employees without Lyme disabilities enjoy.