Living with cholesteatoma, a tumour that destroys the bones in your ear

Even when you think you can’t, you can


I’ve always wanted to write about my experiences but it always seems to come across like “feel sorry for me” which is something I definitely do not want. My everyday life is great – I am always happy, always laughing and I am genuinely in the best place I could be. Then, suddenly the pain comes back, I have another infection and I’m back in the hospital. It sometimes feels like I’m living two lives, the healthy version of me and the sick version of me. I introduce people to the healthy version and often forget to tell people about my health and then accidentally drop that bombshell in the calmest manner – sorry if I’ve ever done this to you.

When I was 13 years old I went swimming with my Nanna on a Monday night as I had done every Monday for years, I was swimming under the water and my head felt like it was going to explode. I didn’t think much of it. I then started to get ear infections all the time, the doctors kept giving me antibiotics. They got really bad sometimes and I was constantly admitted to hospital to be put on an antibiotic drip. I was seeing specialists but kept being told they were just ear infections until one day after about a year of going back and forth a scan showed I had Cholesteatoma, a tumour like growth in the ear.

I had surgery to remove it but the thing was stubborn and still to this day 8 years later I have not got rid of it fully. I’ve had 6 surgeries so far on my ear. School was hard but the invigilators for my exams came to my house so I could do my GCSEs from home, I had a tutor in hospital and I got through it with the support from my amazing family. Fast forward a year and I had to drop out of sixth form because it got too much. After 6 months off I went to college where I had another surgery but got through with good grades and eventually got into Leeds Beckett to study PR which is something I’ve always wanted to do.

A girl takes a selfie whilst her friends have fun behind her

Moving 200 miles away is a tough thing to do for anybody, but moving 200 miles away when you’re ill is a different story. It wasn’t that hard to live with it at first as I was never seriously ill but halfway through second semester in first year I got an infection and ended up being admitted to hospital twice. Being admitted to hospital without my mum by my side was terrifying. Luckily for me, I have really supportive friends and a boyfriend who came with me and bought me snacks (what a babe).

I guess for me the hardest part of being at university and being ill is that I had to do a lot more when I felt awful. I have to cook my own meals and go to the shop and do the things every student has to do whilst being in pain and feeling exhausted. Things that a lot of people take for granted like showering, brushing your teeth, getting ready can be so tiring that you feel like you need to sleep for a year afterwards.

It is hard to explain, but if you have time I recommend you read the blog post Spoon Theory by Christine Miserandino for a better understanding of how tired your sick friends can get and if you’ve got an illness yourself, how to explain the exhaustion to your loved ones. The spoon theory is basically a story of Christine using spoons as a sort of ‘currency’ to explain to her well friend how tired she gets from everyday activities. This has been used by many chronically sick people who have lovingly dubbed themselves ‘spoonies.’

Two girls pose by a plant

Your mental health takes a bit of a battering when you’re sick. I often feel like I cannot keep doing it and can’t possibly get through it anymore but I always do. Even when you think you can’t take anymore, you can. Even when I’m tired and sad and in pain and want it all to be over, I keep going and I get through it and life is so happy after. I don’t want to be all preachy and tell you how to deal with whatever you’re going through but I do believe that you can get through anything.

A group of friends stand outside their front door

If you would like to know more about Cholesteatoma you can go to their website.