If you are among the millions of Americans with a hidden disability — a disability that is not immediately or visually apparent — you have no doubt experienced the kind of injustice it can provoke.
From friends and family who suggest “it’s all in your head,” to co-workers who intimate that you “don’t look sick,” to parking lot vigilantes who sneer at your use of handicapped parking spots, disabilities that aren’t obvious to the outside world can lead to feelings of frustration, isolation, and shame.
In fact, being accused of fabricating symptoms or gaming the system to secure preferential parking or seating can hurt more than the symptoms you battle, said Wayne Connell in an interview, founder of the Invisible Disabilities Association in Parker, Colorado.
“I know people who have a legitimate need for a handicapped placard in their car, but they refuse to use it because they don’t want to get screamed at, or come back to another horrible note stuck on their windshield,” said Connell in an interview, noting his wife, who has multiple sclerosis, was once “berated” by a police officer for 15 minutes when she came out of a store. “They would rather park in a faraway spot than have their car get keyed.”
Younger people who appear well, but suffer silently, are among the most vulnerable to verbal, emotional, and even physical attacks, said Stacy Taylor, a licensed psychotherapist in Berkeley, California, who authored the book, “Living Well With a Hidden Disability.”
“I think it’s especially hard for younger people, because everyone expects them to be healthy and recover quickly,” she said in an interview.
The list of hidden ailments and disorders is long, but includes arthritis, seizures, extreme fatigue, hearing loss, vision impairments, memory loss, depression, and congestive heart failure, which makes it harder to walk long distances.
Often, such symptoms are the byproduct of a specific disease or disorder, such as lupus, Lyme disease, cystic fibrosis, fibromyalgia, or diabetes. (Calculator: How much disability income insurance do I need?)
Have a ready response
To help counter comments that are inappropriate, whether intentional or otherwise, Taylor suggests those with hidden disabilities arm themselves with a ready response.
“Remain calm,” she said. “Say, ‘Oh thank you, I’m dealing with a serious disease and I’m not feeling well today.’”
It’s also important to educate your friends, family, and caregivers about your illness, said Connell, who co-authored the book, “But You LOOK Good!” with his wife Sherri.
Talk to them about your symptoms and let them know how they can help.
“A lot of times loved ones don’t know what to say so they say hurtful things,” he said. “When you tell them that you are tired, for example, they might respond that they’re so tired, too. But they’re tired because they worked all day, or went to the zoo with their kids. You’re tired because you are sick and so exhausted that you can’t even sleep. They are trying to relate, but that’s not relatable.”
Instead of suggesting that you must be getting better because you managed to make it to Thanksgiving dinner, let them know that you are still very sick and feel more supported when they acknowledge the effort and tell you how happy they are that you could make it, said Connell.
If a loved one kindly offers to help, let them know what tasks you appreciate most — perhaps driving your daughter to piano lessons on Tuesdays, or emptying the dishwasher without being asked.
Take care of you
It is equally important, of course, to take care of you.
Many people with disabilities draw strength from meditation or their faith, said Taylor.
Others find great comfort from joining a support group, where peers share their experience in a judgment-free zone. Most associations linked to specific illnesses host regular meetings through local chapters.
For its part, the Invisible Disabilities Association offers an online community that allows users to offer tips, solicit advice, and volunteer words of support, which is especially well-suited to those whose illness is too unpredictable to commit to meetings on a regular basis.
“People with disabilities have to support themselves,” said Taylor. “You are not alone. There are millions of people out there like you, but you don’t see it because it’s invisible.
Counseling can be a great help, too, but be selective.
“Choose someone who is trained in cognitive behavioral therapy,” said Taylor. “Otherwise, he or she may try to pathologize your symptoms and suggest this all happened right after your fight with your mother, for example, so they must be linked. They might seek an easy solution.”
Disabilities at work
Because their disability is not easily discerned by others, the Labor Department’s Office of Disability Employment Policy (ODEP) recommends individuals with a hidden disability disclose any job-related limitations to their employer, which may include attendance, concentration, fatigue, memory constraints, or organizational challenges.1
Disclosure enables workers to receive benefits or privileges of employment, explain an unusual circumstance, or request accommodations for which they are legally entitled under the Americans with Disabilities Act of 1990.
That may include a flexible work schedule, written checklists, an ergonomic workstation, a modified break schedule, use of a job coach, or leave for counseling.
Employees can disclose either verbally or in writing to their immediate employer, supervisor, human resources representative, or other appropriate person, the ODEP reports. Remember, disabilities come in all forms.
The mere fact that you ‘look fine’ or never needed a wheelchair, does not mean that your symptoms are any less debilitating.
By taking the time to educate your nearest and dearest and connect with those who share your experience, you can help cultivate the network of support you need.
“With an invisible disability, you don’t necessarily know how you’re going to feel hour to hour, but you do need human touch,” said Connell. “You do need to understand that you are not alone.”
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This article was originally published in September, 2016. It has been updated.
1 Department of Labor Office of Disability Employment Policy, “Shedding Light on Hidden Disability.”