I have a handicap placard. I appear healthy, and I walk a lot, but sometimes, the looks I get when I park in the designated handicap space are priceless because I am taking up a special parking spot for someone who is “sick.” “What gives?” they are thinking. “She doesn’t look sick!”
“It’s a big emotional load,” Dr. Sands says. “People are scowling at you because you took that handicapped parking space, but maybe you’re in intense pain when you walk, or don’t have the lung capacity to walk very far.”
A person is considered to have a disability if he or she has difficulty performing certain functions (seeing, hearing, talking, walking, climbing stairs, and lifting and carrying), or has difficulty performing activities of daily living.
– Americans with Disabilities Act, 1990.
I have several autoimmune diseases that are not obvious to the public unless I am having a really bad day. So-called invisible illnesses affect an estimated 10 percent of the 61 million Americans who deal with a physical or mental ailment that limits their movements or senses, according to the CDC. While a quarter of American adults have a condition that can be considered a disability, only a fraction use visible supports such as a cane or wheelchair, meaning most don’t appear disabled, according to a 2021 paper in the AMA Journal of Ethics.
Invisible illness encompasses many conditions ranging from the common to the never-been-heard-of. You can imagine that people with heart failure, cancer, diabetes, depression, or dementia might not be obviously handicapped despite dealing with frequent exhaustion, chronic pain, nerve damage, or trouble thinking or remembering. Other ailments with constantly changing symptoms are even more invisible. Lupus, digestive disorders, multiple sclerosis, chronic fatigue syndrome, fibromyalgia, Graves’ disease, and rheumatoid arthritis, to name a few, all affect more women than men.
“A huge number of people are sick and just walk around with it, carrying this terrible burden that affects every aspect of their life,” says Dr. Daniel Sands, a primary care doctor at Harvard-affiliated Beth Israel Deaconess Medical Center. “It’s often not until people have a stroke, are wasting from cancer, or have severe anemia from some blood condition that they’re actually going to look sick,” Dr. Sands says. “I’d argue that most illnesses are invisible illnesses unless people choose to talk about them.”
Beyond physical challenges, a unique emotional baggage comes with it. Everyday decisions must be made about medications and symptoms as well as whether or when to divulge to friends and family your condition. Fear of the reaction from other people is also emotionally draining. People can’t see your suffering and may not understand or help you. They might not even believe you. You can also overload everyone by talking about your diseases every time you see them. They become emotionally drained listening when they can’t do anything to help. Empathy fatigue may occur, and the help you might need won’t be there when you need it.
It might seem logical to just tell everyone what you’re dealing with. But that may be easier said than done if you worry that divulging your illness will make you seem incapable or entitled. A small study published online on March 15, 2022, by the journal Disabilities highlighted this dilemma. Many of the 25 participants with invisible conditions said they feared that disclosure might cost them career opportunities or be viewed by co-workers as “faking it” to get on-the-job perks.
But keeping your illness under wraps comes with distinct drawbacks, fueling a haunting sense of separation. “It’s lonely to have something you’re keeping a secret. It’s isolating,” Dr. Sands says. “If you don’t share that with people, you don’t get the emotional and social support you need that might help you handle things better.”
Hurtful comments
Family, friends, co-workers, acquaintances, and strangers don’t always think before they question our disease and its limitations. Here are some familiar questions and comments those with invisible illnesses often hear from others:
- You don’t look sick.
- Are you still sick?
- When are you going to get well?
- At least you don’t have cancer/ALS/brain tumor, etc.
- You need to try exercise, supplements/oils/avoid gluten/find a new doctor/alternative medicine/yoga, etc.
- Why are you parking in a handicap space?
- Everybody gets tired.
- You’re just lazy.
- You’re packing on the pounds.
- Just ignore your pain; I just push through mine.
- You just want attention.
- You’re canceling on me/us again?
- You are just playing sick to rob the disability system.
- You are exaggerating your symptoms and limitations.
- I heard you went out the other day, so why not now?
Just this morning, a nurse who lives across the street from me said, “I heard you have rheumatoid arthritis. You can’t possibly have it; you look so well, and you walk all the time.”
As if it’s not bad enough to have an unpredictable rare disease with an abundance of symptoms, treatments, complications, side effects, flares, etc., another layer of frustration is added because the way you look is no indication of how you feel. People around you often don’t take your disease seriously or even remember that you have it.
People with autoimmune diseases all use different strategies to handle their disease and how they handle questions, remarks, and unsolicited advice. It is easy to get our feelings hurt and difficult for many of us with chronic conditions to get respect and support for ourselves. Since some situations may leave you speechless and others may cause you to lash out, it may be wise to decide on different ways of handling certain situations before the situation presents itself.
- My condition is chronic; it is likely to continue and even get worse as time goes on.
- My disease does not have a cure.
- It is difficult to get appointments with the specialist physicians who understand my disease.
- There are different types and subtypes of the group of diseases referred to as autoimmune diseases.
- Patients respond differently to the medications and treatments available. Some do not respond to the same treatment another patient is receiving for the same disease, requiring various combinations and dosages to find what works best for them.
- Others end up with health issues due to damaging treatment side effects.
- Indescribable fatigue and other ailments are common with most autoimmune diseases.
- There are different types of arthritis; it isn’t necessarily the one your grandma might have had.
Other diseases, such as cancer, might be considered invisible illnesses as the outward signs of the disease may not be evident until the disease is more advanced, but there appears to be more understanding and acceptance because these types of diseases and treatments are more familiar and everyone seems to have an understanding about them.
It is wishful to think that everyone who knows you will remember and be compassionate about your limitations, but it isn’t a realistic expectation, especially since you may show few or no outward symptoms. It may require frequent reminders and a variety of ways of explaining your situation.
It may also take patience and acceptance on your part about people’s difficulty understanding your disease and limitations because they have not personally experienced and cannot see your disease, and most people’s advice and questions come from a place of concern. Be careful and cautious who you choose to confide in, understanding may take some time and several explanations. Carrying around frustration, stress, and anger can be emotionally and physically draining and unproductive. The best thing you can do is try to educate to help others understand.
Nancie Wiseman Attwater is the author of A Caregiver’s Love Story.
