The Language Around Invisible Illness Matters

Reading time | 9 min

Let’s play a little game of chronic illness bingo.

Are you ready?

Tick off your card if you’ve ever heard one of these phrases:

  1. “But you don’t look sick.”
  2. “Oh, you’re too young for that.”
  3. “You wouldn’t be given anything to cope with that you couldn’t handle.”
  4. “You poor thing. That’s so sad!”
  5. “Remember, there’s always someone out there who has it worse,” “Yeah, I’m really tired, too,” or some other similarly dismissive comment

BINGO!

If you don’t have a chronic illness, these phrases might sound innocuous. Harmless, even. And in some cases, perhaps supportive and understanding, right?

Wrong.

Well, that’s the case for me and many other people who have to live with chronic and invisible illnesses every day. I’m sure that most of it comes down to a lack of understanding. But even though people might have good intentions when they say these things, thoughtlessly blurting out any of the above phrases can lead to an upsetting and frustrating experience for those of us who have to listen.

Let’s work our way through why, shall we?

1. But you don’t look sick

Being invisibly ill is a double-edged sword. On the one hand, we can “pass” as healthy if and when we need to. We’re often not victims to the (shameful) societal stigma around disability, and what it means to be somewhat “other.”

I have suffered from Ehlers-Danlos syndrome (EDS) for as long as I can remember, and in 2013 I was diagnosed with postural orthostatic tachycardia syndrome (PoTS) and histamine intolerance. In November 2015, I was also diagnosed with myalgic encephelopathy (ME). EDS is a connective tissue disorder that causes frequent joint dislocations, unrelenting pain and fatigue, gastric issues, and so much more. The PoTS essentially means that my autonomic nervous system can’t do its job and regulate my body, and I had a couple of years where histamine intolerance meant that I got sick when eating most foods or going near pretty much anything. I’ve also suffered from severe bouts of depression, although these are often either hormonal or reactive after I have a flare-up. I also tend to get pretty anxious these days. It’s lots of fun.

None of these are things you can see. To most people, I look like a healthy 28-year-old woman.

When you don’t look sick, lots of people find it incredibly hard (and, in some cases, near impossible) to believe that there’s actually anything wrong with you. That makes it tough for us to live our lives on anywhere near a level playing field with everyone else.

This happens in so many parts of society — from people in the medical profession to friends, family, bosses, government officials, and those who work in public spaces.

Many people with invisible illnesses struggle to get a diagnosis because they look fine. They struggle to get government support that they’re legally entitled to because their condition is fluctuating and not well-understood. They struggle to navigate relationships of all kinds because people don’t “get it.” And they struggle to find or stay in employment because reasonable adjustments aren’t considered necessary for someone who can, on the surface, “push through.”

This is often exacerbated for women. After all, we’re all just hormonal, hysterical, complaining, emotionally delicate little things, right? (In case you couldn’t tell, that was sarcasm.)

There’s evidence to suggest that conditions that affect women at higher rates than men — such as chronic fatigue syndromeendometriosisfibromyalgia, and autoimmune conditions — are significantly more likely to be dismissed as psychological. Several research papers, such as this one in the Journal of Law, Medicine, & Ethics, have found that women experience gender bias when being treated for pain.

In other words, some medical professionals may not take women’s pain as seriously as they do men’s.

But what does this mean in reality? It means that a vast number of people across the United States are suffering with life-limiting and life-altering conditions, and unable to even get tests that can lead to a diagnosis. This not only cuts them off from receiving assistance and care that can lessen their suffering and make life more manageable, but it also makes it harder for them to get the recognition they need to obtain support in other areas of their life.

A proper diagnosis can open doors — but you’d be shocked by how many get slammed in my face. I can explain my condition and how it affects me in minute detail, but a stranger can still look me up and down, see a seemingly “healthy” 28-year-old, and dismiss me as a lazy spoiled brat.

This can be frustrating, upsetting, and even outright dangerous. I’ve been forced to work in ways that have knocked me out for months on end. I’ve been forced to walk or stand in busy environments that could cause me severe physical trauma. And I’ve been forced to beg, tears streaming down my face, for help on public transport from staff who should really know better.

And you know what? It sucks. I spend more energy planning and organizing (and often begging) for assistance — so I can do the simple things that everyone else my age gets to do — than doing the things themselves. And even then, I still can’t think of a time when I haven’t felt like I’d be safer and happier in bed.

And that’s a sad thing.

It’s so important to understand that there are many conditions that are invisible and fluctuating, and that affect everyone in different ways. Just because you can’t see something doesn’t mean it’s not very, very real to the person experiencing it.

I may be nice and smiley if we’re sitting down to have a meal. But you wouldn’t know that it’s my one trip out a week, and I nearly had a panic attack on the way there because someone knocked into me, and I had to lean on my boyfriend to get to the restaurant because my knees were giving way under me, and that when I get home, I’ll curl up in a ball, barely able to function.

2. “Oh, you’re too young for that”

This has been cooed at me by many middle-aged and older people. When my grandma says it, I don’t mind. She’s had unrelenting pain her whole life and is quite possibly the funniest person I know.

Everyone else, including the women who work in the pharmacy and random people I tell at work, should quiet down.

I know I’m too young to be in pain. That didn’t stop it starting when I was 9 years old.

Being young (and in my case, looking significantly younger than I am) can also cause problems in terms of receiving decent treatment. In my experience, either doctors don’t believe that my pain levels can be that bad, or they weren’t able to give me adequate medication because I was too young for full-strength doses.

It took me until I was 21 to get a diagnosis, and seven more years of excruciating daily pain to be prescribed the correct medication. And even that only helps enough so that I can kind of do stuff on some days.

3. “You wouldn’t be given anything to cope with that you couldn’t handle”

Can I swear here? Probably not, but I’d really like to.

I hate it when anyone says this to me. As a starting point, let’s recognize that not everyone is religious, spiritual, or faithful to some kind of higher power.

If believing that your pain and suffering is part of some bigger plan, then that’s fine. If that helps you cope, you do you and keep believing that.

I don’t believe that in the slightest, and I’d be deluding myself if I did. It doesn’t help me in any way, and when people tell me that there’s a “reason” for my day-to-day suffering, it only winds me up, and almost invalidates that pain.

I’ve been told by people who don’t even know me well (and complete strangers on the internet) that the reason I’m sick is that I don’t believe I can be cured. FYI: I can’t be cured. My condition is caused by a genetic fault in my collagen.

I’ve worked so incredibly hard to get to a place where I can accept that this is just my body, and I have to learn to live with it, rather than fight against it. Every time I hear these things, it makes it harder to hold onto that knowledge and just get on with my life.

4. “You poor thing. That’s so sad!”

Thanks! I don’t need your pity. If you care, find ways to help (see below).

5. “Remember, there’s always someone out there who has it worse,” “Yeah, I’m really tired, too,” or some other similarly dismissive comment

Unless you truly know what it feels like to be chronically ill, you really have no idea what we have to put up with on a day-to-day basis. I like to explain it thusly:

Imagine you’ve been working 14-hour days doing hard labor for a month, with an awful rush hour commute in a busy city. You’re going out drinking pretty much every night, eating terrible junk food, and barely sleeping. You wake up with a hangover, and trundle into work once again. That’s how I feel every single morning. I wake up feeling like I’ve been hit by a bus. And no amount of sleep will fix it.

That’s what fatigue feels like. Add on top of that, I have frequent migraine attacks (so that I can barely open my eyes), joints that pop out on a whim, and constant, unending pain.

If you don’t know what that feels like, please don’t compare. The fact that someone out there is sicker than I am? Well, I feel badly for them, but that doesn’t change my unique experience of my unique body, and will not make my unique suffering any less traumatic and difficult to cope with.

I recognize that a lot of these comments probably come from a general lack of understanding of chronic conditions — especially when you can’t SEE just how difficult they are — and people not knowing what to do or say.

But ultimately, all of the above also come from a lack of empathy and actual consideration for the experiences and feelings of other people. Many of the things people say are more about them than anything else.

Fab ways that you can support someone in your life with chronic illness

Just as it’s important to use sensitive language when talking to someone about their chronic illness, it’s even better if you can step up and offer real help. Here are a few fab ways you can actually show support and understanding:

  • Recognize that you may not understand how that person feels, but tell them that you’re there for them.
  • If you don’t know what to say, tell them that. Don’t just disappear. Ask what you can do. Sometimes it’s just sitting around watching TV or helping to cook dinner. Sometimes it’s giving them space — don’t take this personally. But be led by them.
  • Don’t dismiss their experiences. If someone asks how I am, I’ll be honest — and these things may sound bad — but I’m often not complaining. This is just my reality.
  • Learn about their condition — but don’t try to offer up solutions or “cures” you found online or heard from anyone else.

So there you have it. Whether we realize it or not, the language we use matters. Dismissive, patronizing platitudes only reinforce the challenges that those of us with invisible disabilities already face. It only takes a tiny change to make a huge difference.

NPS-US-NP-00303 MAY 2018