Losing my sense of self due to IIH
I don’t really know why I’m posting this. Maybe I just need to know I’m not alone.
When I was 18, I moved from Ireland to Australia. I was backpacking, travelling, making friends, and genuinely living the life I’d always wanted. I was around 50kg, active, fit, healthy, and had a great social life. My days were spent at the beach, going out with friends, and enjoying the freedom of being young.
That Christmas, only a few months after moving, I got meningitis.
I recovered, and by April I noticed I’d put on a little weight. It was only a kilogram or two, so I didn’t think much of it. I blamed eating out more, drinking more, and enjoying myself.
In May, I flew home to Ireland for a family holiday. Between weddings, parties, and seeing everyone again, I realised I didn’t actually want to go back to Australia. Staying home with family and eventually moving in with my then long-distance boyfriend felt like the right choice.
Then July came.
My family went away on holiday, and every single day I had a headache. I never mentioned it because I didn’t want to ruin the trip. I’d go to bed with the headache and wake up with the exact same one. My face had become really swollen too, but I convinced myself it was just the heat.
When I got home, I went straight back to work.
By August, the headaches were every single day. I had an excuse for all of them. Maybe it was vaping. Maybe I wasn’t drinking enough water. Maybe it was the 5 a.m. starts. Maybe I was tired. Maybe I needed a stronger glasses prescription.
Then one day after work, I got scared.
I’d had ripples in my vision all day and was avoiding making eye contact with customers because I couldn’t focus properly. Driving home on a narrow country road, I saw what I thought were two tractors coming towards me. Then I realised there was only one.
I had double vision.
I pulled over, drank some water, rolled down the window, hoping it would pass, and somehow drove home.
The first thing I did was tell my mum.
After a bit of negotiating, we agreed I’d go to Specsavers to get my eyes checked before going anywhere else. During the eye scan, they found swelling on both of my optic nerves.
The optometrist told me to go straight to the Emergency Department and had already sent my details to the Eye and Ear Hospital.
At the Eye and Ear, they repeated the scans before telling me I needed to go immediately to Tallaght University Hospital.
That’s when I knew this wasn’t just headaches anymore.
That’s when I was diagnosed with Idiopathic Intracranial Hypertension (IIH).
Fast forward a few years, and my life couldn’t be more different.
I’m now 86kg despite trying everything I can to lose weight. I know weight and IIH have a complicated relationship, but it’s heartbreaking watching your body become something you don’t recognise. My confidence is gone.
I’ve tried every medication available through my neurologist and ophthalmologist , but I either don’t respond to them or can’t tolerate the side effects. A shunt isn’t considered an option for me.
The biggest loss hasn’t even been my health,It’s my life.
My social circle has become tiny because I can’t keep up with the drinking culture or late nights anymore. So many days are simply unmanageable. I spend so much of my life cancelling plans, recovering, or just trying to get through the day without my head feeling like it’s going to explode.
Sometimes I think about the 18-year-old who moved across the world, and I barely recognise her. She was carefree, adventurous, confident, and full of plans. I feel like IIH stole that person from me.
I’m exhausted. I’m grieving the life I thought I’d have, while trying to accept the one I do have.
If you’ve made it this far, thank you for reading.
If anyone else has IIH as a young person and has felt like they’ve lost themselves, I’d really love to hear from you. I feel incredibly alone in this.