Invisible Illness: What It Means and 7 Ways to Cope

Many Americans are navigating daily life with chronic health issues that aren’t always apparent to onlookers, such as mental health conditions, autoimmune disorders, and diseases like diabetes, arthritis, and Alzheimer’s. These are colloquially known as invisible illnesses.

Although not a formal medical diagnosis, the term “invisible illness” encompasses a wide range of physical and mental health conditions with symptoms that aren’t visible to others but significantly impair a person’s day-to-day living. Behind a seemingly normal exterior, people with invisible illnesses may be grappling with pain, fatigue, mental health issues, or cognitive difficulties.

It’s an experience that can make you feel isolated and misunderstood, especially when others don’t understand or can’t empathize with what you’re going through. But there are ways to cope with an invisible illness, from tapping into passions and retaining your identity to advocating for your health and setting clear boundaries.

“It's any disease in which the person doesn’t necessarily look sick. They're continuing to do the things that they need to do like going to work and remaining social, but behind the scenes, they can be very, very sick,” says Stephen Lupe, PsyD, a clinical health psychologist and the director of behavioral medicine in the department of gastroenterology, hepatology, and nutrition at Cleveland Clinic in Ohio, where he treats people with invisible illnesses.

“The not being seen part means you don’t have something that elicits sympathy on sight. And that changes the experience in a big way,” says Joy Selak, PhD, coauthor of You Don’t Look Sick! Living Well With Invisible Chronic Illness, which she wrote alongside her rheumatologist, Steven Overman, MD. The book chronicles Dr. Selak’s decades-long journey with two invisible illnesses: interstitial cystitis, a chronic illness affecting the bladder, and trigeminal neuralgia, a neurological condition.

• Chronic fatigue syndrome
• Cancer
• Diabetes
• Dementia
• Depression, anxiety, and other mental health diagnoses
• Fibromyalgia
• Rheumatoid arthritis
• Endometriosis
• Autoimmune disorders
• Long COVID
• Sleep disorders
• Renal failure
• Heart failure
• Lupus
• Digestive disorders
• Multiple sclerosis
• Autism spectrum disorder
• Attention deficit hyperactivity disorder
• Dyslexia and other disorders that affect learning and cognition

Living with an invisible illness often involves a complex mix of emotional, social, and systemic difficulties.

Feeling Invalidated or Misunderstood

People with an invisible illness may encounter loved ones, coworkers, or friends who don’t believe they’re sick simply because their ailment isn’t obvious, says Christine Crawford, MD, MPH, an adult and child psychiatrist, assistant professor of psychiatry at Boston University School of Medicine, and associate medical director at the National Alliance on Mental Illness.

You may hear comments like “But you don’t look sick,” which can feel invalidating and dismissive. Some people may even be on the receiving end of glares for taking a handicapped parking space because you look able-bodied. “No one questions a broken arm, but they do question an invisible illness,” Dr. Crawford says.

Diagnostic Delays and Care Access Issues

Many people with invisible illnesses may face skepticism, even from medical professionals, leading to long delays in diagnosis or treatment, Selak says. “It was seven years from the onset of my symptoms before I got my first diagnosis, which sadly is not uncommon and still quite true today,” she says.

Lack of Support From Others

When your loved ones can see your illness, they may automatically offer to help, check up on you, and may be more lenient with you when it comes to work, making plans, or other commitments. This isn’t always the case with invisible illnesses. “You don’t always get that love and empathy from having an invisible condition, and that’s really difficult for a lot of people because they really do need it,” Crawford says.

“But if it can’t be seen, then it doesn’t elicit sympathy. You have to explain yourself,” Selak says.

Social Isolation

Many people living with an invisible illness often feel like they need to wear a mask, or hide their symptoms, to get through a work day or social events, which can be tiring, Dr. Lupe says. That’s why a lot of people withdraw from their relationships. “It puts a barrier between you and other people. You pull back from a lot of social engagements,” he says. That can lead to feelings of loneliness.

Mental Health Risks

Between the anxiety of managing a chronic condition to feelings of hopelessness or sadness from accepting a new diagnosis, mental health concerns are often elevated among people navigating an invisible illness, Lupe says.

Stigma and Disclosure Dilemmas

Managing an invisible illness requires advocating for yourself and your boundaries, staying grounded in your identity and your passions, and being gentle toward yourself, Selak says. These seven tips can help.

1. Advocate for Your Health

If you have a doctor who doesn’t understand the symptoms you’re reporting or is unsure of how to proceed, don’t be afraid to advocate for your health and speak up.

“If your financial situation and insurance situation allow it, search until you find a doctor who believes you and has expertise in the symptoms you’re having,” Selak says. During her journey, she faced some trial and error before finding a medical team she trusted.

2. Set Boundaries

Whether you’re asked to commit to a business trip or join a family gathering, say no when you need to. And don’t feel guilty about it because your rest and wellness come first, Crawford says. “I recognize how incredibly difficult it is, but I really hope that people can feel empowered to set limits and do what they need to best take care of themselves,” she says.

You also get to decide how much or how little detail you want to disclose, Lupe says. “Some people are private, and they’re allowed to be private. You can speak about it in generalities and say, ‘I have a medical condition that I’m being treated for,’” he says. There’s no need to disclose more if you don’t feel comfortable.

3. Take a Pause

Invisible conditions can come with debilitating fatigue, from physical tiredness to the emotional toll of managing a chronic illness, says Selak. Be sure to give yourself a break when you need it, she says.

She began taking daily rest periods, marking out at least two hours midafternoon for a respite after years of disrupted sleep. “And that went a long way to helping me. And when I began to get more restorative sleep, it definitely improved my symptoms,” Selak says.

It could also mean working with your healthcare provider to complete Family and Medical Leave Act documentation and then speaking to your manager and the human resources department about taking time away if you need it, Lupe says. “It takes some of the pressure off,” he says.

4. Find Your Tribe

With a diagnosis of interstitial cystitis in hand, Selak dug deeper into understanding her condition and how it would affect her life, with the help of support groups and her family. She joined the Interstitial Cystitis Association, meeting other members with the condition, serving on the board for three years, and lobbying Congress to support research related to this rare disease.

“It really helps to process your story and your journey,” she says, encouraging others to join support groups to learn more about their condition and to make connections with people who fully understand what you’re going through.

Her family also became a pillar of support. As a group, they discussed how to adjust their lifestyle — family vacations, for example — to accommodate her needs.

Having allies like these can make the experience that much easier, Lupe says. Decide who you can open up to and let them in. “Talk to the people closest to you so you get that support. It’s an important variable that increases health,” he says.

5. Allow Yourself Space to Grieve Your Past Life

In their book, Selak and Dr. Overman describe four stages of living with an invisible illness: falling ill, receiving a diagnosis, grieving the news, and then living well and making peace with the condition. Keep in mind that you probably won’t move through these steps in a neat and orderly fashion, and it’s normal to experience bouts of grief even as you’re making peace with the condition, or to receive a new diagnosis while you’re still grieving.

During the grief stage, you may mourn your old lifestyle — what you used to do, eat, and prioritize that you may need to reconsider with your new condition, Lupe says.

“Accepting you’re not a healthy person anymore and what you’re living with is something you’re going to live with for a very long time, it’s almost like you have to let go of the person you used to be,” Selak says.

Talk therapy with a mental health professional can help you through this step. Crawford suggests trying supportive psychotherapy, which can give you — the patient — the floor to talk about what you’re going through. “It’s a unique opportunity to focus on just yourself without advice or homework. It’s a listening ear, and for some people, that’s quite helpful,” she says.

6. Find New Meaning in Life

Selak thrived as a stockbroker but had to leave her job to focus on her health. “Leaving my career was devastating. I loved it but had to say goodbye to all these wonderful people who worked with me for years,” she says.

But in the next chapter of her life, she discovered new life passions — philanthropy, writing books, gardening, and nature stamping — all of which fit safely into her new lifestyle as she managed her condition.

Selak encourages others living with an invisible illness to do the same, whether it is a creative outlet, spirituality, or learning a new language or skill. “Ask yourself, ‘Who can I be now? What will my life include now?’ And there may be great blessings,” she says.

7. Remember Your Illness Doesn’t Define You

Remind yourself that you are more than your invisible illness, Crawford says. “For a lot of people, they tend to identify with their illness, and it consumes their life. They get lost in the diagnosis,” she says.

This is why many doctors remind their patients that they’re living with their disease, instead of saying they’re schizophrenic, diabetic, or depressed, for example. Their condition is just one part of who they are, not their entire identity.

Take stock of who you are outside your illness, including all of the attributes that make you unique. You’re a parent, a daughter, a friend. You have talents and hobbies and interests. “You’re still a whole person,” Crawford says.

• Invisible illnesses are chronic conditions — such as diabetes, fibromyalgia, endometriosis, depression, and autoimmune disorders — that don’t have obvious symptoms to others but still significantly impact a person’s daily life.
• Living with an invisible illness often means navigating stigma, delayed diagnoses, and feelings of isolation, since symptoms are not outwardly noticeable to others.
• Ways to cope with an invisible illness include advocating for your health, setting boundaries, leaning on supportive communities, and finding new meaning in life beyond just managing your condition.