Chronic Illness - AIP

The frustration of living with an invisible illness

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If you currently have an invisible illness and are looking for something encouraging to read, this is not it. I am not about to share “10 easy ways to deal with an invisible illness and make people understand you”.

I wish. But no.

Life with a chronic illness is hard. So hard! Especially when it’s “invisible”. And there are times, like now, when I feel so discouraged, so tired, all I can do is indulge in some blogging-self-pity.

But, you might ask, what’s the big deal, Nancy? Cheer up, it’s not like you have cancer!

Well, precisely.

It’s hard to do hard things, like saying No, setting boundaries, prioritizing your own self-care (and so, putting other people’s needs second), when people don’t see what you’re going through.

With an invisible illness, you don’t get the same validation as you would with a “regular” illness, which means you have to rely entirely on your own judgement, and trust yourself.

But first, and in case you have no idea what I’m talking about (but I have a feeling you do, otherwise you wouldn’t be here):

What is an invisible illness?

An invisible illness is a chronic condition with debilitating pain and symptoms that can’t be recognized just by looking at someone” (CreakyJoints).

As explained in Harvard Health Publishing, invisible illnesses encompass a laundry list of ailments. But “more opaque are ailments with wax-and-wane symptoms, such as lupus, digestive disorders, MS (…) or rheumatoid arthritis, all of which affect more women than men”.

Invisible illnesses include but are not limited to migraines and headaches, Crohn’s disease, lupus, arthritis, IBS, Sjogren’s Syndrome, endometriosis, fibromyalgia, etc.

There are invisible mental illnesses too: think of depression, for instance.

An invisible illness is just that: invisible. People don’t see it. They don’t see that you’re sick, you don’t have a fever, a plaster on your leg, or a missing arm.

You “look” normal.

You’d think that’s a good thing. Well, not necessarily.

The challenges of living with an invisible illness

If you’ve read a few of my posts, you’ll know that I’m not one to wallow in self-pity (for too long). I’ve written extensively about how to come out of depression alone, how to pull yourself out of a downward spiral, and even how to be grateful for an illness (coming soon!).

Still, I’m not a robot.

And having not one but multiple illnesses that are all invisible, sucks!

Here are a few reasons why.

invisble illness
Credit: Canva

1. People don’t understand you

I’ll be honest, most people try to be… understanding. To a certain degree.

But that’s the thing: they don’t understand. They don’t understand what it feels like to have lupus, endometriosis, or rheumatoid arthritis. To have stomach pain that makes you want to scream every time you eat something.

They don’t even know what these illnesses are!

Also, healthy people don’t know what it feels like to have constant, chronic pain, all the time.

TV has led us to believe that sick people are in hospitals and healthy people live a “normal life” outside. How can you be sick and not receive adequate care? Isn’t there a cure for everything these days?

(At least, that’s what I think unconsciously goes on in our minds. Yep, mine too).

2. You have to constantly explain yourself

Imagine having to talk about the most private areas of your life, to people you’ve often just met, to justify the fact that you can or can’t do things as basic as work, eat, or go to the movies.

And then having to deal with whatever reaction these people will have about you, good or bad.

Constantly.

You might say: then don’t explain yourself!

My answer: obviously, you’ve not had to deal with that.

Although I will say, I now stay as vague as possible, especially with strangers, and don’t explain myself unless I truly have to. But still, even at home, I find myself having to educate my family, friends, my partner, and his family, a lot more than I would have wanted to.

It’s exhausting.  

3. (Some) People judge you, and no, it’s not “just in my head”

The (not so) funny thing is, invisible illnesses tend to strike women more often than men. Which makes things even more difficult when I speak to men about it. Healthy men, you know, like my boyfriend. His dad, my dad, the men in my family, coworkers, former classmates, boss, etc.

I swear, sometimes, I can see it in their eyes: they wonder if I’m not just a wimp.

According to Health.com, a study in The Journal of Pain found that when men and women complained of the same level of pain, the observers noted that the female patients were in less pain.

But it’s not just men. Nobody understands.

To be fair: I don’t understand either.

4. Even my doctors didn’t believe me

(Again, to be fair: I think my doctors don’t understand either).

For almost my entire life, my doctors didn’t really take me seriously, brushing me off and saying things like: “It’s stress” or “Have you tried Advil?”.

After years of this, I had reached a point where I BELIEVED I was crazy. I was exhausted, ashamed, confused. I wanted to die. Literally.

That’s what makes invisible illnesses so challenging. It goes beyond the illness itself (as if that wasn’t enough).

Not only do you have to deal with the (very real) pain you are experiencing, but you also have to deal with:

  • The fear of not knowing what’s wrong
  • Having to go through multiple exams, tests and being tossed around from doctor to doctor
  • The shame of feeling like you are inadequate and having to face people who, at times, make you feel like you are lying, or just weak (shout out to my former boss!).
  • And the shame of not being able to perform at the level expected from “normal humans”.

You can never catch a break.

At least, with a broken leg or cancer, people show empathy.

When it comes to invisible illnesses though, you’re lucky if people don’t flat-out call you a liar.

(No, I’m not minimizing cancer or broken bones. And I’m not wishing that on anybody either).

5. It creates even more health issues

All this played a big role in the long years of depression that ensued.

And guess what? Depression is an invisible illness too.

I mean, why not add one more to the party while we’re at it?

invisible mental illness
Credit: Canva

6. And now, things are even worse

Cherry on top…. My health keeps deteriorating. Yes, in some ways, things did improve (especially since I discovered The Wahls diet), but at the same time, they are getting worse.

For example, I now have chronic dry eyes so severe, I can barely work on a computer. For months I couldn’t even function. It was one of the scariest things I’ve ever experienced in my life. (Coming from a person who’s been held at gunpoint when I was 16).

Even just finding ways to earn a living is becoming a struggle. And I’m only 34 years old! How will it be in 10, 20, 30 years?

Try explaining to your family that, this girl who had a high-paying government job can’t work anymore because of dry eyes??

7. Oh, and did I mention that these illnesses are expensive?

Invisible illnesses are not invisible for your wallet.

Can you believe that I spend almost CAD 200$ every month on eyedrops/eye care and supplements alone?

Yeah. And did I mention that I have trouble keeping a “normal” job?

You do the math.

How to support someone with an invisible illness?

Honestly, I don’t know. But I guess some compassion would be nice.

Also, when you don’t understand something, why don’t you pull out your phone and do a quick Google search on the topic? The worst part of dealing with other people’s cluelessness is having to deal with the consequences of their cluelessness on our health (see my point on “It creates even more health issues”).

If you want to support someone with an invisible illness, do us a favor: show some degree of interest and educate yourself about it. On your own. Like the big boy or girl I know you are.

Go read about it. Especially if the person with the invisible illness is part of your close circle or someone you see every day (like a coworker for example).

You have more impact than you think.  

To conclude this rant

I didn’t really have a goal writing this. But who knows? Maybe this post will help bring more awareness around the topic of invisible illnesses.

Maybe you know someone who suffers from a chronic invisible illness. And maybe, just maybe, after reading this, you will think twice before saying something like: “I’m sorry, why can’t you eat that pizza? Ugh, these millennials and their fad diets”.

If, however, you have an invisible illness, then let me know in the comments how you deal with it all. We can all use some encouragement… or a place to collectively vent!

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About Steph

I am a personal growth/self-management enthusiast. I was able to completely transform my life using everything I share here. I hope this blog helps you transform yours as well.
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