What It’s Like to Live With a Chronic Illness

Chronic illness can be difficult not only for the person with the illness but also for the people around them.

If you know and care about someone who has a chronic illness, you probably empathize with them and want to be helpful and caring. But it’s easy for people who have never experienced chronic illness themselves to misunderstand what their loved ones with chronic illness are really experiencing.

You may find yourself getting annoyed with your loved one for not taking suggestions that you offer in the spirit of helpfulness or for canceling plans on you at the last minute. Or you may wonder why they don’t speak up for themselves more in public and feel surprised when they don’t like it when you speak up for them.

But it’s important to see these kinds of things from the point of view of someone who has a chronic illness.

Take a look at some facts about what it’s really like to live with a chronic illness and how you can be the most helpful to a person you care about who has a chronic illness.

People Constantly (Mis)Diagnose You

People who have a chronic illness usually have to explain that illness to the people around them.

It’s not like having a cold, where you might be able to just go home and not answer the phone for a few days until you feel better. The sick person may need accommodations or display symptoms that require some type of explanation, at least to their friends and family.

Often, what happens when the person with chronic illness discloses their diagnosis is that they’re met with alternative suggestions for what it might be:

  • “Are you sure that it’s [chronic illness]?”
  • “I knew someone who thought they had [chronic illness], but it turned out to just be [treatable, temporary condition].”
  • Or even worse, they might hear, “Oh, I don’t believe in [chronic illness]. You’re probably just [tired/in need of exercise/not eating right/etc.]”

Chronic illnesses can be hard to diagnose.

Often, by the time the person receives a definitive diagnosis, they’ve already been misdiagnosed by one or more people with a medical degree first. And even if they haven’t, you can be sure that their medical team has considered all other potential diagnoses before settling on the chronic illness in question.

You may be trying to encourage your loved one to think positively – after all, if it’s not a chronic illness, but something temporary or something that can be treated easily, that’s an improvement, right? But what you’re really doing is invalidating the sick person’s experience of their own body.

Don’t assume that you know more than the sick person and their medical team. If someone shares with you that they have a chronic illness, just express your sympathy and ask what you can do to help.

You Learn the Spoon Theory

If you have friends with chronic illnesses or disabilities, you may have heard them talk about their spoons or reference spoon theory. Spoon theory refers to an essay by Christine Miserandino explaining what it’s like to live with a chronic illness to a friend.

Essentially, the sick person starts each day with a limited number of spoons. Each task that the person has to do during the day costs a spoon. Even tasks that healthy people never think about, like getting dressed in the morning or taking a shower can cost one (or more) spoons. And when the spoons run out, that’s it – you can’t do any more tasks that day.

This analogy works because even if you can’t picture what it’s like to live with chronic illness, you can picture a handful of spoons, and you can understand the concept of “paying” for each task with a spoon.

Try it yourself – grab a dozen spoons and walk yourself through your day, giving at least one spoon up for each task you have to perform. See how many you have left by the end of the day, and consider the decisions you had to make to avoid running out of spoons too early.

This may help you understand what life is like for your chronically ill friend or loved one.

You Always Have to Decide Whether or Not to Disclose Your Diagnosis

We tend to think of medical information as private, but people who live with chronic illnesses don’t always have the option of keeping their health information to themselves.

Aside from friends and family members, they often wind up having to explain their illness to perfect strangers in public places in order to receive necessary accommodations.

This is especially true for people who have so-called invisible illnesses. People with invisible illnesses may not look sick to the casual observer, but they still may not be able to do everything that a healthy person can do. A few examples of invisible illnesses include:

  • Chronic fatigue syndrome
  • Allergies
  • Diabetes
  • Most mental illnesses

However, the need to decide whether or not to explain their illness isn’t limited to those with invisible illnesses – even people who use assistive devices like wheelchairs or show other outward signs of disability or illness are often asked to explain themselves or are even accused of faking it.

If you go out with a friend or loved one who has a chronic illness, you may notice that sometimes they avoid explaining their illness, choosing instead to go without an accommodation that would make their experience easier or more enjoyable. Sometimes friends and loved ones see this as the sick person failing to advocate for themselves.

You may be tempted to step in and advocate for them. But unless you’ve been asked to do this, don’t.

Sometimes people with chronic illness choose not to disclose, even if it means going without accommodation. They may have learned that in some situations, they may face verbal abuse or worse for doing so, and sense that this is a situation where it’s not safe to disclose. Or they may simply be tired of talking about their health status to strangers.

Ultimately, it’s their decision whether or not to disclose their illness.

Imagine having to explain your health status to strangers every time you went out in public – would you want to? Would you always feel safe doing so? Keep in mind that this is their call, not yours, and stay out of it unless the sick person asks for your help as an advocate.

When you care about someone with a chronic illness, it’s important to make an effort to understand what their life is like.

Use your imagination to put yourself in their shoes, then think about what you would want from your loved ones if you were them.