The Things You Don't See With Invisible Illnesses

About the Author: Katie May is a Chronic Illness Warrior and blogger. She shares with her readers the ins and outs of having a chronic illness, from the misconceptions of invisible illnesses to how she handles hospital visits in current events. She's an incredible story teller and you can find more of her writing over on her blog (KTMY), and you can also check out her very aesthetically-pleasing Instagram feed here.

Invisible illnesses are just that, invisible. Trying to explain to someone that you’re ill when on the outside is HARD. On those days where it’s taken all your strength and energy to get out of bed and then at some point during the day, someone tells you how well you’re looking. 

It’s enough to make you want to scream! 

I’ve been chronically ill for 8 years now and it still grates on me how inconsiderate people can be! It’s only recently where I’ve taken off the pressure, guilt and need to prove that I am ill. Which is absolutely ridiculous. 

So, to help show you that you’re not alone, we’re going to do some myth busting and share the things you don’t see with invisible illnesses.

You can cure yourself by eating *insert weird superfood health supplement here*

NOT TRUE. This one annoys me SO SO SO SO much. Not only is it really rude and not okay to comment on what people eat, it’s also not true. 

I definitely have foods which can trigger symptoms of my IBD and Fibromyalgia but in no way do they cause the issue. 

So take your health supplements else where please.

You’re not disabled if you have an invisible illness

As a law graduate, I can expressly say that this is not true. 

Under the Equality Act 2010, invisible illnesses are classed as a disability. You might wonder why it’s so important to know that. Well, you can access more help when you have a disability. Whether that grants, support or in your job or University.

I’ve written a whole blog post about disability rights and chronic illness which you might find useful.

Being tired and fatigued are completely different things

I’ll say it again for the people in the back: being tired and fatigued are not the same the thing. So please stop comparing the two.

Everyone gets tired, burnt out and does too much. 

But fatigue is different. The heavy eyes and foggy head that doesn’t even subside with 8+ hours of sleep. You’re limbs feeling twice the weight they are. The effort to just lift your head. It’s a lot. It’s hard to deal with and you often don’t know when it’s going to hit. 

You can do everything right and still have a flare up

Some flare ups are worse than others. You can have eaten all the right things, done all the right exercises, rested the perfect amount of time and it will still happen.

Yes, you can do things to help reduce the likelihood but it will still happen. Learning to accept that myself has been hard so I know how difficult it is to wrap your head around, but there is no cure.

Just because we look well doesn’t mean we’re not in pain

Flare-ups usually consist of some type of pain. Be that joints, chest, stomach, ovaries, headaches, muscle pain or wherever your disease/condition attacks.

But when you spend a lot of time dealing with pain, you can also be very good at hiding that you’re in pain. 

You might see me going on my walks, smiling in a picture or living life ‘normally’ but behind that is the everyday pain I deal with.

Thank you for the well wishes but I’m not going to get better soon

The phrase get well soon when you know your chronic illness isn’t going to go away is a bit redundant. And during a bad flare-up bothers me. Today, when I’m having a good day, not so much because I do get it.

You don’t want your friend or loved one to be in pain. You do want them to get better. Again, it comes from a good place. And often, when it’s said to me, I don’t know what better actually means. I forget what my normal looks like and the idea of better seems far away.

It’s important to note that flare-ups are different to each individual person. How they cope and manage is personal to them and it’s sometimes a hard thing to explain. The best thing is to just be there, see if they need help with anything and don’t take it personally if they choose to do things their way.