Everything you know if you have a chronic illness

Some days we have our ups and some days we have our downs – such is the life of chronic illness.

For those who don’t know, chronic illness is defined as a health condition that is continuing and long-term. There are a variety of chronic illnesses, some that cause mobility problems while others rapidly take away our energy – there are a few universal struggles.

I have a few chronic illnesses, the one affecting me the most being vestibular disorder. It basically means that my body has an extremely difficult time calibrating balance. Symptoms range from visual problems and getting upstairs all the way to nausea and dizziness. Although my chronic illnesses are not the same as others, there are a ton of overlapping ideas that every person with a chronic illness understands.

So without further ado, here is the unofficial list of shit every person with a chronic illness knows.

If you are a “spoonie”, you definitely have experienced some variation of the following.

That moment when you don’t know whether or not to bring your mobility aid

You wake up feeling good but you know that sometimes it can be too good to be true.

My solution? Pack a foldable cane in my bag just in case.

The Spoon Theory is actually so real

Originally coined by Christine Miserandino, The Spoon Theory is essentially the idea that a person with a chronic illness only has a certain amount of energy per day, which is represented by a number of “spoons”. Each activity we do costs a certain number of”spoons”, and when we run out for the day that means we cannot do anything else without repercussions.

If you are chronically ill, you definitely relate to this idea. You have to be careful with what you spend your spoons on. Want to go out to dinner with friends tonight? Then you definitely can’t spend your spoons on working out or cooking breakfast.

Spoonies unite!

When you run out of energy but all the seats are already taken

Every person with a chronic illness knows that sheer moment of panic when you need to rest but all the seats are occupied on a bus or in a waiting room, especially if your illness is not visible at first glance. Even if people are nice about it, it’s hard because we feel like we are intruding on others.

Or even worse, there is no where to sit

This is probably the greatest fear of any person with a chronic illness. Is it okay to sit on the floor? Because I’m probably gonna do it anyway.

Or if there are no bathrooms

What the living hell is this? How can we even be in the 21st century and not have public restrooms? Some of us really have to go.

You have to seriously plan shopping

From trying on clothes to picking out dinner, shopping can be a serious struggle. The walking alone drains us, but trying to socialize or make decisions on purchases is just straight up exhausting.

The mall is actually my worst nightmare.

Cooking is definitely not always a thing

It’s not like we are lazy. Many of us enjoy cooking, but sometimes by the end of the day we are so out of energy even making dinner is exhausting.

Shoutouts to Grubhub for saving us last second on those tiring nights.

Clothing can be a lot of effort

It’s not like we are going to go naked or something, but sometimes it can be draining trying to get an outfit together that can meet your needs for the day.

If you see us in a cute skirt or maxi dress, please be impressed.

Also sometimes makeup is not an option

I’m pretty sure every person agrees that makeup can be a lot of work. But for those who are chronically ill, the struggle is pretty real.

Thank goodness for BB cream.

“You have a chronic illness? But you don’t look like you are sick”

Yeah you’re right we are totally 100% healthy. Why did we bother going to a doctor anyway? Real talk though, I think y’all got it backwards.. we’re just really good at faking being well.

“Oh you’re sick? I hope you feel better”

This is a toughy when someone says this. We wish that is how it works, but that would defeat the whole point of the word chronic. Thanks anyway for the kind thoughts though.

If someone has a cold, you steer the hell clear

We already have enough to deal with, please do not get us anymore sick, especially if we have an auto-immune disease.

Not. Fun.

Having to literally take a day to recover from doing too much

Sometimes we just need a break okay? My bed is calling to me.

Or needing to rest after doing basically anything

This is a problem, especially if you are running out of energy for the day. You do not know fatigue until you have to rest after taking a shower.

Or that moment when you have to plan your entire week just to make sure you have enough energy to do everything that is important

Trying to predict how many spoons you’ll have for the week is actually the hardest thing to do. How many spoons does it take to drive to work?

I should have paid more attention in math class!

But just because we have a chronic illness does not mean we can’t function

Yes, we may have a long-term illness but this by no means inhibits our dreams, relationships, and productivity. We have careers, go to school, get degrees, and have goals just like everyone else.

We just have to do a bit more planning is all. We may chronically ill but we are also chronically fabulous