Why Do We Need People To Understand Our Invisible Illness SO MUCH?


Why do we say we have an invisible illness?
Is is because we feel invisible to people?

As I have been planning and promoting Invisible Illness Awareness Week I have been able to see a magnified version of what kinds of posts and tweets people respond to. Even here at the II Week website you will find 20 Things to Say to an Ill Friend or 20 Things Not to Say to an Ill Friend, Can You Be Friends with Someone Who Thinks You are Faking Your Illness, and more. All of which encourage people to share.

There is a lot of conversation about “us”– and “them.” Those who get it–those who don’t. We use terms to describe our communities like “spoonies” and healthy people as “normals.” And we can easily slip into sarcasm as a way of avoiding talking to our loved ones about our true feelings.

Why is there so much emphasis–and desire–

to talk about relationships?

The “hot topics” about invisible illness are often related to those relationships.

We talk about how our relationships affect our illness.
. . . And we talk about how our illness affects our relationships.

We talk about marriage and how communication (or lack of) can make our illness worse.
. . . We talk about how support from a spouse can help us cope so much better.

We talk about bosses and our co-workers. And should we work and why we work and how we work.
. . . And how we feel when we can no longer work.

We share our stories about our young kids, our teenage kids, our adult kids, our troubled kids.
. . . And some of us wonder. . . should I even have kids?

We talk about our mom and our dad and if they believe we really are ill.
. . . And we talk about caring for our mom or our dad, because now. . .
we are the caregiver. . . because they are ill.

invisible-illness-understand-2And sometimes we feel better.

And sometimes . . . we don’t.

What does this have to do with our actual disease?

Regardless of your illness, it likely has many names. Chronic, degenerative, disabling, terminal, auto-immune, neurological, benign . . . and invisible.

When we say we have a “chronic illness,” we are specifying the length of time this illness is likely going to stick around.

But when we say we have an “invisible illness” we are describing a condition that is hidden.

Which shouldn’t really matter.

It shouldn’t really matter whether people can SEE that inflammation, cells, digestive issues, chemical imbalances, infections, blood sugar, high blood pressure.

Because it’s still there. But somehow it does matter.

People want to look at us, sum us up, see something to prove what is really going on inside of us because then they know the message to give us. If it is all in our head, then why would they need to search for the right words in this awkward situation? They want to fix it, to help us feel better, but sometimes that comes out as, “find the positive, get some grit, grin and bear it.”

They need to see what is wrong with us, so the can say, “oh-h-h, now I understand.” They want to help. And no one can help until they know what is wrong.

Most illnesses aren’t completely invisible

Your illness may be invisible. No symptoms. None. But maybe not.

invisible-illness-understand-3We have just become a society that looks the other way, rarely taking time to understand why a person hesitates before standing or who struggles to open the door at the store.

I notice many diseases now, as I have become more familiar with what invisible symptoms look like.

I see the way a woman walks and understand the pain in her feet.

I see a child struggling to control himself and understand it could be the “H” (hyper) in ADHD.

I see a man pause and fight for balance before stepping off a curb and I suspect he is concentrating on that simple step perhaps because of a stroke or a healing hip, or a recent back surgery.

They are not invisible. Even their pain or physical muscle weakness is not invisible. And yet we call the diseases an “invisible illness.”

Why call our illness invisible?

While the words “chronic illness” means long-term, the term “invisible illness” is more apt to describe the overlapping relationship between us and another person. And most of that overlap of us and them may not include our illness, a big part of our reality, and thus, identity.

In the graphic image below, if you live with a disease that significantly impacts your average day, than you and I would be the teal color. The illness is red, and the friend is purple. See what a small area the average friend may see of your life?

Now, some friends would overlap our circle a lot, but if you are struggling to figure out why your friend isn’t “getting it” it may be because he or she is simply not in the circle. Even though a friend may know you, it may just be that sliver of you that is peeking out from behind the disease.

graphic-of-what-illness-relationships feels like

And yet, should our illness be a part of all of our relationships? Consider that we do not expect everyone around us to know our other experiences that define our identity. For example, must everyone know you are a mother, a divorced person, a person who recycles, or a Republican? Must one know you are dealing with infertility, an overdrawn bank account, a teenager who is stealing your medications, or a dog who eats your shoes?


And yet, are those examples the same as a chronic illness?

For some–yes. Your illness may be extremely private to you. Or it may be an inconvenience, but not disabling. Maybe you have more good days then bad days or the idea of sharing that you are too tired to go to the store is breaking etiquette rules.

For others–no. We cannot move or breath or have a life without our illness showing its control over our body. It puts us in the position of fighting for everything.

We fight to have fun, we fight to recover afterwards, we fight to be a parent and then we fight to raise the children, we fight to get up and we fight to go to sleep . . . we fight to matter. To be something other than a person who is ill.

We feel like we need most people to know about our illness because it really is part of who we are. If they don’t know about the fight, they don’t really know who we are.

–Even though we wish it was different.

And this is why invisible illness is spoken of

invisible-illness-understand-4Many have a chronic illness.

But those of us who are talking about having an invisible illness wish for people to understand us–the real us–not just the shiny, smiling us on the outside. We want people to see more than just the sliver.

Invisible illness is all about the relationship.

It is about how we are perceived. It is about how we are acknowledged, understood, explained, heard, interpreted, rationalized.

It is about our having the strength to become transparent and reveal the ill us. And then, seeking validation for our revealing, which is a human need.

We aren’t looking to be excused or exempt. We don’t want to be pitied or pardoned.

We want someone to say, “I see YOU . . . and I will do my best to be the me you need.”

And that is what every person desires.

. . .Those who live with invisible illnesses.

. . . . Those who live with visible illnesses.

. . . . . . And those who live without any illnesses.

Because you don’t know what the person beside you is fighting for.

So rather than waiting for someone to be what you need, start by being what someone else needs.



Lisa Copen is the woman behind Invisible Illness Awareness Week and as she seeks to encourage others she also has a desire to better understand the emotions behind our wish for validation. She is the author of “Why Can’t I Make People Understand? Understanding the Validation Those with Chronic Illness Seek and Why” and she offers spiritual support at her ministry RestMinistries.com.


  1. karaleigh2 says

    I’ve never been reluctant to share my diagnoses and symptoms, because I’ve wanted people to know that I was trying my best, but that I was dealing w/ this or that that were interfering w/ my succeeding at times. I wanted my boss and co-workers to know, because I was slower than I used to be, couldn’t get overheated, had severe fatigue and later pain and depression. I wanted my church to know, because I could no longer be there every time the door was open, couldn’t help w/ as many things, etc. I wanted my friends, family, etc. to know–even strangers–that I wasn’t just being lazy because I just was or because I was overweight, but that I really had to pace myself…and yes, the decreased activity over the yrs. has slowly but surely caused me to put on more and more weight, esp. as I’ve acquired more autoimmune illnesses.

  2. Aleah Meggs says

    I just learned today that I have an invisible illness! I was diagnosed with severe acid reflux. I have what is called atypical or silent reflux or in medical terms laryngopharyngeal reflux. I don’t have the actual heartburn or indigestion. What symptoms I do have are choking on my food coughing nasal drip and a very sore throat. If I eat the wrong things it can ruin my whole day or even my quality of life. And all along I thought it was just allergies! I have to struggle with this everyday for the rest of my life now and it sucks!

    • firedrake says

      I was diagnosed with the same thing back in March, in the third month of problems with bronchitis, only to find out the bronchitis was being caused by acid reflux up into the bronchii.

      At least prescription Omeprozole is helping some.

      • Aleah Meggs says

        I don’t take medication for it but I have this book called Dropping acid it is a cookbook and diet for reflux. It has changed my life.

    • Tricia says

      Wow – I have something very similar. I knew I had acid reflux, but it didn’t seem like a big deal most of the time. My bigger concern was a chronic, horrible cough which I thought was caused by allergies. Sometimes I would cough so bad I would actually throw up. I only recently found out that my acid reflux was causing the cough, not allergies! If I had let it go much longer, I was rising severe damage to my esophagus. I’ve been avoiding going back to my doctor, for fear that he’ll order laproscopic surgery.

  3. Tricia says

    Good article. This reminds me of what I went through when I suffered from postpartum depression. At the time I didn’t know anyone else going through it (no one who wanted to talk about it, anyway), and it was debilitating. I’ve never been in so much emotional pain, and it also manifested itself in physical problems. It was completely invisible to everyone else though, and I felt like no one understood.

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