On the 1st September 2019 I published my open letter to Crohn’s Disease. This is a piece that I am incredibly proud of because it was the first time, in 14 years, that I felt able to articulate this journey. Give it a read if you haven’t already.

I may have a diagnosis of Crohn’s Disease but this is just one in a long list of ‘invisible illnesses’ that all share very similar characteristics and similar symptoms, and side affects. From anxiety, depression to IBD, arthritis, multiple sclerosis, autism and many more. The list is endless. 

So, what is it really like to live with an invisible illness?

To cut it short, no one day is ever the same. Energy levels are inconsistent. It is isolating and it is also extremely frustrating because you can be wiped out without a moments notice. This is just scratching the surface. The effects vary dramatically from person to person, the information is almost impossible to collate. I can only write truly about my personal experiences.

“It is so unpredictable” – @ostomummy

“You always wonder what is going to happen next?” – @gruggwiththeibd

“it is feeling vulnerable all the time” – @fighting.crohnsandcolitis

Living with an invisible illness is a long road, battling misconceptions, feeling super poorly and feeling like you have to defend yourself. Constantly trying to prove that what you feel is genuine, but it is always questioned because it simply isn’t visible. It is the feeling of failure, that you are not good enough because you simply can’t keep up.

Have you ever woken up and your body feels so heavy, like a ton of bricks are sitting on top of you?

Have you ever had to sit down whilst taking a shower because your legs cannot hold you?

Have you ever felt so tired that your body crashes, yet you can’t sleep?

Have you ever felt on top of the world, to crash down in pain and exhaustion in seconds?

It is all of the above points and more.

I put so much pressure on myself to show up, to make myself up and to act normal. But the truth is, I have a lot of bad days. Sometimes it is impossible for me to be the person I want to be because I’m juggling fatigue and pain. We are only human and we need to remember to take a step back, it is ok to have a bad day, it is ok to take it slow. 

I am writing this today to highlight to you that we are just trying to do our best, and our best is enough. You are enough.

Behind the @crohnswithme Instagram:

Endless hospital visits.
Passing out with exhaustion.
A constant fight.
It is showing up and giving 100% effort.


Soph x

Insta: @crohnswithme


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s