Tanya's Hope Story
Tanya was diagnosed with IIH in February 2022 and realised that she wasn’t handling the diagnosis very well.
“I was angry in life” she remembers. “I felt lost. IIH is ‘idiopathic’ – there aren’t any answers, no reason for it. Nobody understands what you’re going through. There was no-one who could really relate to the situation I was in. I was angry with the world.”
After finding out about the online Hope programme for people with IIH from a Facebook support group and the IIH charity, Tanya felt that she had nothing to lose by joining a course.
On the Hope course, Tanya found other people in the same situation, who understood the condition and who could relate to each other. “It gives me something positive to focus on, I’m not just sitting around feeling negative all the time. I was stuck in a rut” she says. Tanya enjoyed the videos that are part of the course. She had already tried Mindfulness ‘a bit’ and found the video and extra practice was interesting and helped her to better understand what’s involved. She’s using Mindfulness 3 or 4 times a week now and Tanya says this has made a difference to her anxiety and sleep.
Setting herself small goals was Tanya’s favourite part of the course “It didn’t have to be a massive goal. Just something to give yourself a bit of motivation” she explains. Before her diagnosis, Tanya had been training to run 5k. After her IIH diagnosis, Tanya had sometimes been so ill that she couldn’t get out of bed, or walk. But during the course, Tanya used goal-setting to increase how much she was walking.
“I did it!” she says proudly “I actually walked 5k!” The picture she posted of herself when she’d done it on the group forum got lots of likes and comments. “It’s good to get encouragement from other people – and to help encourage them.” Tanya is still setting herself goals to keep walking.
Tanya also enjoyed the Zoom cafes that are held every week. “There was no pressure. I’d never used Zoom before and I was really, really anxious. I didn’t put my camera on or speak at all at first”. By the end of the course, Tanya put her camera on and joined in. “It’s a safe space, not too intense. I could talk about any issue at all.” she says. “Everyone’s in the same situation as yourself. We’re all in the same boat!”. Tanya is still in touch with some of the other people she met on the course, in a WhatsApp group they decided to set up.
So how would Tanya sum up her time on the Programme? “Overall, I loved it! I found it very helpful” she says. “I was sad when it finished. I want to do it again!”
Hope For the Community CIC and IIH UK have partnered to run free online group self-management courses for people living with IIH, or caring for someone with IIH, called the Hope Programme.
Our next course will take place from 14/09/2023.