Kim Slater is slowly going blind and spends most days stuck in bed with exhaustion.
That’s all due to a brain tumour… that isn’t actually there.
Kim, 30, from Bristol, has a rare condition where her body acts as though she has a dangerous tumour. This has left her debilitated.
Kim was diagnosed with idiopathic intracranial hypertension (IIH), a condition that occurs when high pressure around the brain causes tumour-like issues – in December 2019, six months after symptoms including headaches and vision distortions began.
Affecting one in 100,000 people, the cause of IIH is unknown and there is no cure.
‘When I was diagnosed, I was at my worst – I had migraine-like headaches every day which left me dizzy, nauseous and emotionally drained,’ Kim said.
‘The pain was exhausting and I often got confused, couldn’t speak properly and would forget things because of brain fog.
‘My boyfriend Liam moved in and did almost everything for me, from cooking to cleaning, to even helping me to the bathroom on particularly bad days.’
Kim’s body mimics the exact symptoms of a tumour. These include fluid build-up, which causes headaches and dizziness. However, no mass comes up on scans.
In November 2019, with headaches and changes in her vision, Kim visited her optician. She was referred to a specialist the following day and underwent tests.
‘[The doctor] told me that he didn’t want to worry me so he didn’t want to share what he thought the problem was until he knew for sure, but that I would be taken for an emergency CT scan,’ she recalled.
‘My mum and I started the walk up to the hospital in silence until I broke it and said: “they’re looking for a brain tumour, aren’t they?”
‘My mum is a straight-talking lady so answered truthfully that yes, they were but we would deal with whatever happened.’
While they waited for the results, she and her mum used ‘dark humour’ to take their mind off the present.
But soon they were stuck with the challenging reality of IIH.
She said: ‘Not knowing what the results would be, I made an effort to think about all the people that were important to me and the things in my life that mattered as I wondered if it would all change after that day.
‘Obviously I felt relieved that it wasn’t a tumour, but I felt deflated too. I still didn’t have a real answer and in my 10 minutes of research about IIH on the drive home I realised the outcome didn’t look great.
‘Academically, there were hardly any papers referencing it and all the anecdotal stories seemed to be tragedies about people losing their eyesight or living in pain forever.
‘I even had moments over the following months when I wished it was a tumour that I could cut out and throw away to get on with my life. A tumour felt easy to understand, for me and everyone else around me. This just felt messy and I didn’t know what it would mean for my future.’
Following an MRI and lumbar puncture, Kim was given her official diagnosis. Unfortunately, the condition has severely affected her vision and since she was told the news, her eyesight has deteriorated.
In the meantime, Kim consulted a new doctor who explained there is a link between obesity and IIH. He urged her to lose weight to aid her recovery but due to a long history of eating disorders, this caused further issues.
‘I consider myself recovered but it’s still in the back of my head every day, and it came back with a vengeance when I was stuck in bed and felt worthless,’ she explained.
‘I worry about my eyesight every day but I feel like I’m stuck choosing between that or my mental health.
‘I would rather end up blind than be pushed into suicide by my eating disorder.’
Kim’s family members and her partner have stepped up to look after her, with Liam becoming her carer. Luckily, she found a neuro ophthalmologist and GP who are more considerate of her past.
She was prescribed medication but last month this stopped working and Kim now feels cynical about seeking help.
Her biggest fear is losing her sight completely.
‘I’m scared of going blind but mostly because I don’t know how I will function,’ she said.
‘The actual experience of going blind doesn’t scare me as much as you might think – I’ve always handled whatever is thrown at me. But how will I relate to the world if I do lose my eyesight? Will I lose my independence? Will I feel even more isolated?
‘The scariest part for me is feeling out of control.’
Kim’s options are limited and she may be facing a procedure of having a shunt drain the fluid from her brain to her stomach. She calls this the ‘worst case scenario’.
‘I’m not confident in my doctors – will they refuse to give me treatment because I haven’t lost weight?’ she added.
‘Day to day I struggle and am in pain every day. I still have to fight that voice telling me it’s my own fault and if I was skinny I’d be OK.’
Kim rarely sees her friends and spends most weekends in bed. Liam is always there and he is something she’s ‘eternally grateful’ for.
For now, she’s still working on coming to terms with the challenges ahead.
She added: ‘I have no idea what my future looks like and I’m very conscious that I may have to give my career up at any point. Along with the risk of blindness, my chances of a stroke, brain aneurysm, or cardiac event are also increased.
‘I’m learning to live with it and get support from the IIH community online. It’s not easy at all, but all I can do is make the most of today and live in the present without being too hard on myself.’
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