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Living with an Invisible Illness: How to Get Support When You Don’t Look Sick

Nearly one in two Americans has a chronic illness or physical condition, and many of these sufferers live with “invisible” symptoms. Conditions such as fibromyalgia, lupus, chronic fatigue syndrome, rheumatoid arthritis, and Lyme disease don’t always have obvious, identifiable symptoms. And as painful and debilitating as these diseases can be, coping with insensitive reactions from friends and family can make living with an invisible illness doubly exhausting and demoralizing.

“Well, you look fine! I think it’s just all in your head.”
“Maybe if you just got a little exercise you would feel better.”
“You should try changing your diet or taking vitamins. I heard about this supplement…”

When people don’t understand how sick you are, how can you get the support you need?

Know Your Illness

Take the time to research your condition. The better you understand your illness, the better you’ll be able to speak about it with others, and the better your friends and family will take cues from you. Learn the medical terminology, as well as the symptoms, your follow-up needs, and the effects of medications. You’ll have the information and tools you need to address unwelcome advice.

Take Control of Communication

Decide the way you want people to approach or reach out to you. One VNSNY expert recommends sending an email blast (or having a close friend or family member spread the word for you) to interested parties telling them what they need to know about your illness, what you may need help with, what you don’t want to discuss, and what potential side effects from medications you may encounter. “It can be very helpful, especially for close friends and family. People sometimes don’t know what to say, and they will avoid you or say the wrong thing.”

Draw the Line

When a person becomes ill, it is often a life-changing event for everyone in his or her circle. Your friends and family may become very anxious about your health, and how it may affect them. Remember that your first responsibility is to your own health! If others are sucking emotional energy from you, make yourself aware of it and limit their interaction with you. Recognize at this time, you need to put your needs first.

If you’re on the other side of the equation, you may wonder about the right thing to say to someone living with a chronic illness. VNSNY clinicians say that what most patients want to hear is about how you can help them: What would you like to tell me about what is going on with you right now? What can I do to support you?