Naomi's Hope Story

Naomi was newly diagnosed with IIH and was still getting used to her medication, when she heard about the Hope Programme from IIH-UK via their Facebook group. Having never heard of IIH before her diagnosis, Naomi says that living with the condition “was quite an eye-opener – it was a whole new world out there for me”. She was actively looking for more information, support and to learn from other people with IIH.

Seeing that other people who’d already done the course had found it helpful, made friends and kept in touch, Naomi signed up – “I had absolutely nothing to lose” she says. “But I’m a technophobe!” Naomi admits. So were there any problems with the IT side of the online course? “The app’s really simple! It was very easy to navigate, to save my place so I could go back to it” she explains. “If anyone messaged me, I just got a normal notification on my phone and the app opened it on the right page. It’s absolutely brilliant!”

And how did Naomi find the course itself? “The coping with IIH bit was so good! It taught me how to do breathing exercises that help when I’m dizzy” she says. “And I’ve adapted the gratitude diary – I’m doing journaling now. Even though I’ve got this horrible condition, my body can still do amazing things” Naomi recognises.

Naomi also knows that she is much more self-aware now and has learned to listen to her body. “The Boom and Bust cycle taught me not to over-do it on my good days. ‘Cos I’ll end up even worse on my bad days!” Naomi laughs. “And I’ve learned to be kinder to myself” she continues. “So I treat myself now. When I’ve been for a walk and got my steps in, I treat myself to a nice coffee”.

So what might the future hold for Naomi? “It was a big shock when I was diagnosed” she recalls. “”But I’m living with IIH now. I’m not letting it define who I am. I’m still me.”