What is invisible illness?
To others, you appear fine. But you’re all too aware of the huge challenges of living with your illness. Diabetes, heart disease, autoimmune disorders and cancer are examples of “invisible illnesses.” These conditions have no clear signs that you’re ill. You don’t have a rash. You don’t walk with a cane. People may even say, “But you don’t look sick.”
And yet, you are. Around 61 million adults in the U.S. say they have a physical or mental impairment of some kind. And about 10% of those impairments are invisible. Maybe you have pain and exhaustion. Or you get headaches that strike without warning. You may need more rest than most people. Perhaps you can work only part time. Or you need to sit while doing a job that others do standing. All of that can lead to misunderstandings and negative feelings in the people around you.
Invisible illness can be invisible even to a medical professional, says Daniel Hernandez, MD. He’s the director of medical affairs and Hispanic outreach with the Global Healthy Living Foundation and CreakyJoints.org, a digital arthritis support community. So it’s no surprise that people often don’t understand the situation.
That can cause a lot of stress. You already have to cope with your physical symptoms and complications. “Added to that is the emotional burden of constantly explaining your invisible illness to others,” Dr. Hernandez says. “It can be complicated and exhausting.”
Here are some pointers to keep in mind when talking to people about your invisible illness.
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Decide what to share — or not share — with others
First of all, telling people about your illness is totally up to you. “Some people are very private and don’t want to share information. By law, that information is private,” says Lynn Ludmer, MD. She’s a rheumatologist at Mercy Medical Center in Baltimore. “This is fine,” she adds. “There is no obligation to share.”
But that makes it harder for your friends and associates to empathize if they don’t know what’s going on. Building a strong support network is key to managing a chronic illness. And sharing information can be a way to teach people about your condition.
If you do decide to share, these tips can help make your conversations productive:
Be honest about what you’re facing
Don’t say you’re fine if you aren’t, Dr. Hernandez recommends. “If someone asks how you’re feeling, decide what you want to say. But don’t soften your experience for the comfort of others.”
Keep it simple
Stick to the basics. Use easy-to-understand words, not medical jargon, Dr. Hernandez advises. “People can’t understand your illness if they don’t understand the vocabulary,” he says. And try to describe your illness thoroughly.
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Point people toward more information
Steer people toward reliable sources of information about your illness. Don’t be afraid to tell them which websites, books or podcasts have helped you. “Discourage them from just Googling a particular medical problem,” Dr. Ludmer says.
Ask for support
Invite a family member or a close friend to come with you to medical appointments. “They will see that your illness is being taken seriously by a doctor. They can ask questions and be a second set of ears to take notes during the appointment,” Dr. Hernandez says.
Explain that the symptoms are hard to see
Clearly explain what you experience, Dr. Hernandez says. That includes telling people how your illness limits what you can do that day and how the symptoms will affect you for the foreseeable future.
For instance, for people living with arthritis, their pain and tiredness might lessen for days or even weeks. But then the symptoms can flare up and become more pronounced. Describe that ebb and flow to those around you, including co-workers. It can help them understand that just because you don’t seem sick doesn’t mean your illness has disappeared.
Be prepared for misunderstandings
Jess Stainbrook has dyslexia and grew up with a father who lived with epilepsy. Both conditions are invisible illnesses. So he knows what it’s like to be misunderstood when it comes to a medical issue. “There is a lot of frustration,” says Stainbrook, who’s the executive director of the Invisible Disabilities Association.
His organization is working on a bill that would offer a national disability ID card to people with an invisible illness. It’s called the National Disability ID Initiative. If it passes, it would allow people with any illness, disability or chronic pain to have that status noted on their government-issued ID.
But for now, you’ll have to try to be patient with the people in your life. Educating them will probably be an ongoing process.
Finally, if you’re talking with someone who has an invisible illness, practice compassion. “We need to be kinder and gentler,” Dr. Ludmer says. “We don’t know what it’s like to walk in someone else’s shoes.”
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Things you didn’t know about invisible illness: Access Living
National Disability ID: Invisible Disabilities Association