The Mighty Logo

What Invisible Illness Really 'Looks' Like: The Parts You Don't See

The most helpful emails in health
Browse our free newsletters

Catch a glimpse of me and you will see a healthy, glowing, strong, beautiful girl – but if you look a little closer and a little harder, you will start to see a little bit more than that.

What you don’t see when you catch that glimpse of me is the effort it takes and the tiredness it causes to do such simple tasks of brushing my teeth, washing my dishes, cooking my food, going to lectures, socializing with my friends. You don’t see me going to bed early after feeling so tired I become nauseous.

What you don’t see when you catch that glimpse of me is the extreme pain I feel the majority of the time. Ripping my body apart each time I take a step. Muscles going into spasm at the littlest of activities. Taking one step in front of the other, trying to hold back the tears.

What you don’t see when you catch that glimpse of me is the blackness and tunnel vision I get when I change position suddenly, having to brace myself so I don’t collapse to the floor. You don’t see my heart pounding out of my chest in response to the slightest movement and the tightness in my chest I get.

What you don’t see when you catch that glimpse of me is the anxiety that comes with leaving the house. You see me with a large bag. Perhaps you think it’s full of books and makeup but no. It’s full of medicines and electrolytes and emergency plans. You don’t see me worrying about the fact that I could end up collapsed on the floor, seizures happening uncontrollably.

What you don’t see when you catch that glimpse of me is the headache which is like a wildfire in my head. Burning away at any concentration I have. My mind misfiring information or perhaps producing nothing at all.

What you don’t see when you catch that glimpse of me is the numbness I have in my left leg. The hard work I have put into physio has meant I can walk on it but it is very odd to be doing normal things with a leg that doesn’t feel.

What you don’t see when you catch that glimpse of me is the countless hospital appointments I attend. Physiotherapy, neurology, cardiology, psychology, pain management, rheumatology – to name a few. You don’t see the infusions I have just to make my body somewhat function, the medicine I take to cope with day-to-day life.

What you don’t see when you catch that glimpse of me is the tears I cry when I hope to be normal and get well. The dreams of one day living a life without this illness, the hopes that one day my symptoms might reduce. I’m not even asking them to be cured. Just reduced and made easier to cope with.

My illness is invisible, but trust me – it’s still there however healthy I may look. Just because it is invisible doesn’t mean I’m making it up, doesn’t mean it’s better – it just means you might not always be able to see it as well as some of my visible symptoms.

Getty Image by panic_attack

Originally published: July 9, 2018
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home