What It’s Like to Live With an Invisible Illness

Source: Claude Monet, Public domain / Wikimedia Commons

Those of us with invisible illnesses often describe ourselves as living in a parallel universe. Before I became chronically ill, I’d never heard this term. I’ve lived in this “universe” for over 22 years now, since I failed to recover from what, at the time, appeared to be an acute viral infection.

One reason it’s called a parallel universe is that those who dwell in it often feel they have more in common with each other than with those without an invisible illness. (The terms invisible illness or chronic illness include those with chronic pain and those who are dealing with a mental illness.)

Here are some descriptions of what it’s like for those of us in this parallel universe:

Even well-meaning friends and loved ones tend to forget that we’re chronically ill.

The reason they forget is simple: our illness or pain or our mental struggles are invisible.

Here’s an example. You have a heart-to-heart talk with a friend about your limitations and about how hard it is because you look fine to others. You also share that you can't go out in the evenings because, by then, your pain levels are too high. Your friend appears to understand, and it felt great to share with her.

But then, a few weeks later, she invites you out for dinner. When you politely decline, she responds with something like “Oh, I thought you’d be able to come since you looked so good the last time I saw you.”

Lesson not learned! Now you face a dilemma. Are you going to tell your friend again that you can look fine but be in pain or feel sick? If you’re like me, you get tired of having to remind people again and again about what it’s like to live with an invisible illness.

It’s particularly hard because you know they’re going to feel bad, as in: “I’m so sorry. Now I feel terrible because I remember that you told me you could look fine but not feel fine.” And then you have to make your friend feel better about having forgotten. Sigh. Being chronically ill can be hard work!

Visits to the doctor can be a tremendous source of stress.

Medical appointments become problematic because, with an invisible illness, many medical practitioners look at you and think you’re fine since you look fine. They’re even likely to prescribe strenuous exercise, which can make many chronic illnesses worse.

Even my wonderful doctor who truly accepts that I’m, in effect, a “long hauler” from that virus I caught 22 years ago will occasionally say to me something like “You’re looking well today, and that’s a good sign.” It may be a good sign to him but it's not to me if, invisibly, I’m feeling sick and/or in pain (the two often go hand-in-hand).

The more “well” I look, the less likely doctors will understand my medical condition. Sometimes they act as if I’m wasting their time. Not surprisingly, this is a source of tremendous emotional stress. When this happens, it’s good to remember self-compassion. You always deserve to be treated with respect and kindness, and if a doctor won’t treat you that way, that’s all the more reason for you to treat yourself that way.

Invisibility can also lead to disastrous outcomes for those in chronic pain. They may be labeled “drug seekers” and be denied much-needed medication. This is a particular problem when people have to go to the ER, and their primary doctor isn’t available to vouch for them. They can be left untreated, while in terrible pain.

In my view, the pendulum has swung too far in the direction of “never give pain-relieving medications.” That pendulum should rest in the middle so that those who are in legitimate need of relief can receive it.

We repeatedly face the dilemma of how nice we should try to look when around others.

This may sound absurd, but those who are chronically ill will know what I’m referring to. Most people, especially women, like to dress nicely when in the company of others. But if we do, the loveliness of our clothes may be taken to reflect the loveliness of our health.

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Multiple people who’ve read my books have sent me emails, telling me that they’ve stopped sprucing themselves up before going to family gatherings because, if they do, everyone assumes they’re fine and then expects them to set the table, do the dishes, take the garbage out, etc. But if you’re feeling sick or are in bad pain that day, all you want to do is sit as still as you can so as not to disturb your body. I know this from personal experience.

When you have to make an excuse for not “doing your fair share,” it’s not uncommon to feel guilty. There are few emotions as painful as guilt. It’s a form of self-blame. It’s a feeling of unworthiness. In moments when you feel guilty that you can’t help out with tasks, that feeling should trigger self-compassion, not self-blame.

All self-compassion “asks” is that you be kind to yourself. I like to silently speak words that apply to the very thing I’m feeling bad about, words such as these: “It hurts to feel bad about not being able to help out, but I know that if I could, I would. I hope others understand but, if they don’t, I must remember not to blame myself. I’m doing the best I can.”

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Millions of people suffer from medical conditions that are invisible to others, even cancer. Our culture does a poor job of educating the public about chronic illness, let alone invisible chronic illness. It’s up to us to try and educate others and, when our attempts don’t work out as we’d hoped, it’s up to us to treat ourselves with compassion.

My best to everyone.

This piece I wrote might also be helpful: “How to Talk to Yourself.”

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