Advice to Women Living, and Working, with an Invisible Illness

“You don’t look sick.” Those dreaded words from a parent when you were ten years old and trying to stay home from school have a different meaning when your supervisor at work says them to you. What “you don’t look sick” means to a person with an invisible illness is you’re lying, you have no work ethic, and you don’t value the company enough to stay here and work a full shift.

Most women occasionally wake up exhausted from the combination of late work hours, a frenzied schedule as mom, chauffer, wife, and CEO, and the added bonus of little life shake-ups like “Aunt Flo” coming for a visit. Most women find a way to cope until they can sleep off the symptoms during the next available chunk of downtime. Most women “just deal with it” for a day or two and move on.

For women with chronic, often debilitating, yet invisible illnesses, “just deal with it” becomes a life-long mantra on a journey punctuated by doctor visits, E.R. trips, falling asleep at one’s desk and dealing with the pain.

What do you do if you wake up generally feeling cruddy most days? How does a woman climb the ladder of success when dealing with an invisible illness like MS, bipolar disorder, chronic fatigue syndrome, or lupus?

She climbs the ladder exactly the way any woman does—one rung at a time. However, for a woman with an illness that isn’t easily recognized or understood, climbing that ladder might require a little extra safeguarding.

National Invisible Illness Awareness Week quickly approaching, September 8-14, 2014, so it is a good time to investigate what professional women with invisible illnesses overcome each day and the tricks they use to make work and life a little easier.

The Invisible Illness Awareness website states that over 100 million people in the United States are living with a chronic illness. Of those, only a small percentage has a visible sign of that illness such as the need for a walker, cane, or hearing aid. The rest—many of them the people you holler at for not looking disabled enough to park with their permit in disable parking—quietly suffer while trying to help people understand.

As if being ill or having a disability was not enough, despite “protection” from various national and state laws, many women still live in fear of their employers finding out about their illness because they fear being picked over for promotions or placated.

Heather Wilde is Chief Technology Officer at ROCeteer. Wilde shared, “When I was 18 years old, I was taken to my college health center by my roommate. Apparently, she couldn’t wake me up, and was very worried, especially because up until that point she’d actually never seen me sleep.”

Tests revealed that Wilde had an issue within her brain that caused a nearly constant pressure and, if untreated, would lead to recurring migraines.  Wilde has been fortunate to have “managed to have a combination of great doctors and amazing coworkers who have helped” her to deal with her illnesses. Her coworkers have gone to great lengths to help her including “keeping the lights off in the entire office for a whole week once because they needed me there,” Wilde said.

Wilde also credits her “truly wonderful” CEOs at previous jobs like Phil Libin at Evernote and Shawn Broderick at THQ  that were “caring, knowledgeable individuals who understand and value the quality of a person’s work over any silly irrelelvant personality quirks they may have.” Her good experiences meant that Wilde never dreamed of keeping her illness from her employers or her clients. Quite the opposite. The short-term memory loss created by Wilde’s medication is a fact she readily shares with her clients. She writes down everything to avoid the embarrassment of things slipping through the cracks, but Wilde jokingly tells people, “”If you don’t hear back from me immediately about something, feel free to nag me incessantly.”

Wilde said, “I’ve found that no matter how many times you’re told ‘don’t admit weakness’ in the workplace, people generally respond well to someone who isn’t afraid to be human.” Although Wilde has had to adjust her work schedule for doctor’s appointments, she has luckily not missed work because of her migraines. She is admittedly a “push through it” kind of woman who will work late to make up work missed. Thankfully, her new, injectible medication can stop a migraine in 15 minutes of the onset, which Wilde called a “miracle.”

Wilde’s positive experience is reinforced by her belief that you simply have to say to yourself, “Ok, it’s a part of me; everyone’s got something-deal with it.” “Then,” she said, “You’ll find that there’s no barrier at all.”

However, for every woman who survives, thrives and avoids injury to her career because of her illness, there are those women whose careers suffer because of an invisible illness. Sometimes the fear of labeling in one’s industry is so great that women not only keep quiet about their illnesses at work, but also cannot go on the record to share their stories for fear of labeling as unemployable in their industry.

Such is the case with a marketing and public relations consultant with 20 years in the entertainment industry who we will call “Mary Miller” because she has asked to remain anonymous for this article. Miller’s experience has left her with several good reasons to remain anonymous, the chief of which is a prevailing wind in her industry that an illness such as hers makes her more of a liability than an asset. From personal experience, Miller said, “Never underestimate the power of the grapevine.” She wants to help other women to learn better ways to manage their illnesses while they climb the corporate ladder.

Miller lives with systemic lupus erythematosus (SLE) with kidney involvement. Although she has long periods of remission, lasting as many as 7-8 years between flare-ups, Miller said, “When I am healthy I am really healthy. The same holds true when I am sick.” Miller was on the fast track for a top spot in her industry. She was an overachiever with a full time staff of a dozen employees who traveled about 60% of the time while winning awards and setting the gold standards in her industry. She was in the closet about her disease until a major flare caused her to take 2 months sick leave.

Rules governing medical leave likely mean that coworkers and employees cannot contact the person on leave, even if the intent is to wish them well during their recovery. Consequently, accounts could suffer in the employee’s absence at the same time that the employee on leave feels very isolated and frustrated.

When Miller returned from sick leave, she could no longer hide her condition, so she went to her boss and explained that she needed a job modification. Her employer’s response left Miller shocked and in awe that a company to which she had dedicated herself could be so cruel. She was told that “the job was the job” and that the company had not caused her illness and would not make accommodations for her.

At this “critical juncture in my career,” Miller said, “I could go one of two ways. I made the choice to resign and take care of my family and my health. I wanted to walk out with my head held high and my sterling reputation in place.”  Miller now cautions women to “keep their disease under wraps.” because, “Big companies want healthy people for optimum performance. They do not want liabilities.” Women, who take charge of their own health and plan, can have long and successful careers, despite sometimes debilitating illnesses.

Although Wilde and Miller’s experiences differ greatly, their goals are the same. They both want to do their job, effectively and with as little detriment to their health as possible. They both also want women to understand that they do not have to sacrifice their health for their career; with a little creativity and planning, you can continue to enjoy a successful career with an invisible illness.

Miller and Wilde offered some sound advice to women living, and working, with an invisible illness:

Practice discretion. Many people have a bias. If you believe that your illness will be seen as a problem at your company, be discrete. Talk about or share your illness only on a need to know basis, depending on the position you hold in the company. In Miller’s experience, an executive should keep more information private than another employee might, but Wilde does not hesitate to tell people at work about her condition. Go with your gut.

Code your Calendar.  Develop codes for your appointments to keep from becoming part of the office chatter. For example, Miller used a code that she created for her doctor appointments on her work calendar, so she could block the time without an assistant being able to share sensitive information through the office grapevine.

Use your Smartphone Smartly. Store all your doctor information, the list of medications you take and the doses as well as an emergency contact list in your phone. Make sure that a trusted coworker, friend, or family member knows where and how to access this information in case you become incapacitated.

Quietly learn Human Resources Policies. You might need this information to protect yourself, and they might not feel obligated to share it with you. Know your medical leave policies. Understand your rights.

Create a Strong Support Network. Have a great network of people outside of work to support and help you to keep up the façade. These people will help you to manage your family and home life so that you can manage your work life more effectively.

Alert Your Doctors. When you have to travel out of town for work, tell your doctor’s office ahead of time. They often have an opinion as to how to manage your care if something happens to you while you are away. Additionally, keep your primary physician’s cell phone number in your telephone in case you become ill while on travel. Miller has become ill while travelling for work and has had the ER doctor speak to her primary physician directly so they can coordinate the correct treatment. For women suffering from chronic illness, this can mean the difference between being out sick for a few days and having to take a medical leave.