Coping with hidden disabilities and conditions on the job: an invisible struggle

stressed_business-womanIn the United States, about 10% of Americans have an invisible disability – a medical condition with physical symptoms that might not be apparent to a casual observer. In fact, as many as 96% of people with chronic medical conditions do not outwardly appear to be disabled. While those with some invisible conditions may be protected from discrimination at work by the Americans with Disabilities Act, whether or not they actually receive that protection sometimes turns, unfairly, on others’ perceptions of the presence of impairment.

Invisible medical issues significantly impact an employee’s work life, regardless of whether the condition is legally recognized as a disability, and in many cases, employers who provide necessary accommodations may still be falling short in providing equal opportunities to those with hidden medical conditions. Many employees fear discrimination after disclosing a hidden disability, but without explaining the medical reason behind a request for change in schedule, work environment, or requirements, employers may not be willing to provide accommodations.

Accommodating hidden disabilities at work

Navigating the fine line between disclosing enough health history to obtain necessary accommodations at work but not so much sensitive information that an employee becomes a potential target for discrimination is a difficult – but doable – task. While only an attorney experienced in disability and employment law can advise those with hidden disabilities about the best course of action for their particular case, women can empower each other by sharing their own stories of the benefits and pitfalls of handling a hidden disability in the workplace.

Leanne*, 29, a communications lawyer for a health nonprofit in Washington D.C., suffered from the effects of the neurological disorder narcolepsy – hallucinations, sleep paralysis, excessive daytime sleepiness, sudden muscle weakness, and disordered night-time sleep – for almost a decade before being diagnosed by a sleep specialist last year. While her most frightening symptom is hypnagogic hallucinations – incredibly vivid visions that occur during the transition from being awake to sleep – the effect most crippling to her career has been daytime sleepiness.

The condition does not always resemble the stereotypical depiction of narcolepsy. Leanne is able to stay awake while working, but she needs to structure her day to include periods of rest in order to be most productive. “When I thought of narcolepsy, I thought of media representations of people randomly falling asleep, like the Narcoleptic Argentinean in ‘Moulin Rouge!’ No one talks about the hallucinations, or what cataplexy (transient extreme muscle weakness) actually looks like,” Leanne explains.

She describes herself as a very private person who tries to keep aspects of her personal life out of her professional life. But since she is unable to work a typical 9 to 5 day, Leanne felt she had no choice but to disclose her disorder to her boss and request permission to tweak her schedule. “I’m very lucky to work from home several days a week, so I can structure my time to deal with the narcolepsy,” she says. “My excessive day time sleepiness often kicks in mid-afternoon, so I get started on work early so my workload is manageable come 3 p.m.”

Narcolepsy can be a progressive disorder, and Leanne knows that may limit her career options in the future. “I plan to mostly apply to places that allow teleworking,” she says, ” to work around my condition so I’m still highly productive. I love what I do and knowing that it can help people with their own health issues, so I’m grateful I don’t have to sacrifice it.”

Sara, 31, a trial attorney in a Southern state, has not encountered the same flexibility and understanding from her superiors as Leanne experienced. Sara suffers from severe peripheral neuropathy, or nerve pain, in her legs and feet following a spinal cord injury. While she acknowledges her boss has been great at accommodating doctor’s appointments and even allowing her to take sick leave she had not yet accrued, Sara says she has been passed over for promotions because -of all things – the shoes she wears.

“As an attorney, I am expected to look and dress a certain way, which includes dress shoes, usually heels. I simply cannot wear a pair of pumps, and even flats leave me in tears after an hour,” says Sara, who also needs to wear socks at all times and thus cannot wear skirt suits. “Women who wear normal shoes are chosen over me because they have more ‘jury appeal.'”

She also says her workplace maintains an isolating policy that lawyers not wearing “court-appropriate shoes,” must stay in their individual offices and not enter the common areas. The most frustrating aspect of all, she says, is the constant need to explain herself, or risk seeming unprofessional. “This may seem superficial, but I’m a trial attorney and it leaves me to either explain my disease to every judge, attorney, and jury member or to leave them thinking that I am just too sloppy, lazy, or cheap to dress appropriately.”

Rebecca, 29, who is a state government attorney in a Midwestern state, suffers from several serious hidden disabilities, including the neurological disease multiple sclerosis, a meningioma brain tumor, a seizure disorder, post-traumatic stress disorder, and major depression. Her office has allowed several accommodations, including a disabled parking pass, an ergonomic chair, the use of a heating pad every day at work, and a standing desk she can transition to when needed. But, just like Sara, Rebecca does not think the physical accommodations and time-off employers may provide make up for lost opportunities, unfair judgment, and second-guessing the abilities of an employee with unseen medical conditions.

Disclosing hidden disabilities: a fine line

Each person’s experiences are, of course, unique to her particular medical circumstance and employment situation.

Rebecca’s negative experiences with disclosing her numerous disabilities began before she even graduated from law school. “When I had my first seizure, I was working for a private firm as a summer law clerk. I was told by a partner that they would love to hire me after graduation but would not because of how much it would drive up their insurance cost,” she says.

Of all of her medical conditions, Rebecca has only disclosed her MS to her current employer since it requires physical accommodations, like different parking availability. “I do not disclose the seizure disorder because people freak out like I am a leper,” she says. Rebecca has also not disclosed her PTSD or depression because she says “the ‘snap out of it’ mentality does still exist. The irony is that depression and PTSD have affected my life much more deeply than MS.”

While many women, like Leanne, have benefited from disclosing their conditions to their employers and working to develop a strategy to increase their productivity, Rebecca at times wishes she had not been open about any of her disabilities. “Since my MS diagnosis, I have been determined to be open about my health. I didn’t want others to live in fear of being defined and limited by their disabilities. I have written articles and spoken at fundraisers. I now wish I had kept it private and not divulged any more than necessary,” she says.

An even steeper hill for women?

Rebecca cautions that women may face even greater obstacles in handling a hidden disability at work because of their gender, and that is one reason she wishes she had not divulged as much about her health. “It feels good to talk about it on a tough day, but once the world knows you are ‘disabled,’ you have to work twice as hard to prove you are an equal. And you already have to work twice as hard to prove you are an equal because you are a female professional.”

Sara also believes being female unfairly impacts how others view her professionalism in light of the accommodations she must make for her disease. “A female attorney’s appearance is judged much more harshly than that of a male attorney,” she says. “I have found that my female supervisor has been much harsher about my inability to wear skirts and heels than my male supervisors. The men have generally been much more understanding.”

A plan of action

Ultimately, there is no right or wrong way to approach handling a hidden disability. What works best may change depending on each individual’s illness, their employer’s willingness to work collaboratively toward solutions, and the employee’s ability to advocate for herself while keeping the focus on her strengths and skills. “Every person’s experience with their disability is different, so there’s no one-size-fits-all approach,” says Leanne. “Make self-care a priority-whatever that means to you.”

*Some names have been changed to protect privacy.

By Leilani Genovese