The curse of living with invisible illnesses

The curse of invisible illnesses

The summer before starting elementary school, after a period of struggling with allergies and having difficulties breathing, I was diagnosed with asthma. But around the same time, something else started to develop. The older I got, the more insecure and anxious I became, until I started looking for help in my early twenties.

Living for so long with two frustrating, yet invisible, disease that very often restricted me in many ways, I learned what it means like to live with an invisible illness the hard way. When you’re chronically ill, for example with asthma, your life changes. And when that disease happens to be invisible, like asthma or anxiety, it brings a lot of other problems along with it.

People don’t take you seriously.

I noticed this from a young age on, after being diagnosed with asthma, and later also experienced this when talking about my anxiety. Some people just aren’t able to take you, and your struggles, seriously when they cannot see or experience what you’re going through.

As a kid, my doctor didn’t allow me to take part in gym class, especially when we had to run, because exercise triggered asthma attacks. However, my teachers often told me to “just try a bit harder”, “that I was probably just out of shape” and “that my health couldn’t be that bad”, forcing me to join gym class anyway, despite what my doctor had said, causing me to be in a lot of pain, and making my asthma worse in the long run.

You get tons of wrong and ignorant advice.

For some reason, people who have never experienced the disease you’re suffering from seem to love giving you their advice. Often it’s advice they’ve heard through word of mouth, like their sister’s ex-husband his best friend’s daughter’s half-sister’s best friend had once experienced something similar, or from shady websites that have no idea what they’re talking about. I’ve been told that going out for a run will cure my asthma, it doesn’t, or that “just thinking positive” will improve my anxiety, as if it’s that easy.

Some people will make fun of you.

I still remember when I was 10 or 11 and got one of my first panic attacks in school. I was terrified of insects, not just scared of them, but I had an actual phobia of them, so when one randomly crawled over my hand in class I freaked out. I calmed down pretty easily, and didn’t make too big of a scene, but it was enough for my fucking teacher to make fun of me.

She didn’t just crack one joke to lighten the mood, but kept on making fun of me and my fears in front of the classroom, for maybe 10-15 minutes or so. I already felt very ashamed of myself for being so scared of a damn insect, and her reaction only made it worse. I’m sorry, but teachers should know better than reacting that way.

Your needs will very often be ignored.

When you tell your friend you cannot join a night out and want to be left alone because of crazy diarrhoea, chances are big they will respect that request. However, when you replace the diarrhoea with anxiety, the situation suddenly looks a lot different and there’s a good chance they will bug you to join them anyways, while both are very valid reasons to cancel a night out.

Especially when I feel an anxiety/panic attack coming up and ask to be left alone for a bit, people seem to be incapable of respecting that request, and start talking to me even more, and louder, than before. Or when I ask my friends to not smoke right next to me, or at least be ok with me leaving the conversation, because cigarette smoke triggers my asthma and makes sick for days afterwards, they simply ignore it and tell me to toughen up.

You constantly have to prove you are ill.

Look, you can’t see I’m ill, I get it. That doesn’t mean you have to be so skeptical, and literally expect me to prove it every time something happens. Or that you have to act as if everything is fine with me, despite me telling you otherwise, until it’s too late and I get an asthma or panic attack in front of you. It shouldn’t have to matter whether people can see our illness or not, a little bit of trust would be appreciated.

So why is all of this so bad?

Well, first of all, it puts is into potentially dangerous situations. Let’s take the asthma as an example, and the fact that teachers made me partake in gym class anyway, despite letters from my doctor telling them it was bad for me, because they didn’t believe I was that ill, and because they underestimated the disease. That put me in a situation where asthma attacks could occur very easily, surrounded by people who had no idea how to react, or how how serious the situation actually was, and often even put me in situations where I was completely alone.

It also creates an environment where sharing becomes scary, and where it’s easy to be ashamed of our problems. Which then again, can lead to dangerous situations because we can’t be vocal enough about what’s going on. And it’s of course contributing to the negative stigma surrounding mental illnesses, and other invisible diseases.

On top of that, we also don’t get the support we need, and constantly having to prove you’re actually ill, and having to prove your disease is bad enough to be taken seriously, is fucking exhausting.

So what can you do instead when someone tells you they’re ill?

You can start by focusing on what you can do for them, rather than on what you don’t understand. If you can’t fully grasp what it means to have anxiety, for example, but your friend asks you to leave them alone and give them some space, focus on the last part.

People know their body and their mind very well, and most likely know more about their own body than you do. So listen to what they have to say, and respect their requests. If someone feels an anxiety attack coming up, or if someone can’t eat at a certain restaurant because they’re allergic to most of their ingredients, or if they can’t work out with you because of a physical issue, trust that they know what they’re talking about. Don’t question them, don’t tell them they’re wrong. But listen to what they have to say, and respect their decision.

And lastly, get informed. And get informed by people who actually have the disease. You can tell your friend you don’t understand their struggles fully, and ask them to educate you (but respect it if they’re not up for that). Or, you can also read up on it online, on blogs like this, from people who talk about their experiences. It’s of course also a good idea to take a look at medical sites, especially if you want to know how to react in case of, for example, an asthma attack. But keep in mind that those sites just talk about general symptoms or cures, and not necessarily about how people feel when experiencing the disease.

Having an illness is hard enough already, let’s not make it harder for us just because the illness happens to be invisible. Be a good friend, coworker, family member or stranger, and respect those around you when they’re suffering.

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2 Comments

  1. This is so right! People are so quick to judge and think that they know better and it definitely has made me feel really ashamed and reluctant to talk about it/anything in the past! I think we’d all be better off if people were a bit more open minded and considered that they’re thoughts and feelings really aren’t the same as someone else’s and that some things are a lot harder for different people for different reasons!

    Very important points you’ve made! Thanks for sharing!

    JosieVictoriaa // Fashion, Travel & Lifestyle

  2. Such a good post and really well written, thank you so much for sharing.
    When my illness was invisible I went through all the same things. Now that it’s visible, I still experience most of the examples you gave. The more we can educate those that are willing to learn the better 🙂

    Sarah | sarahinwonderland.co.uk <3