You Don’t Look Sick: ‘I worry about telling people at work about my brain tumour’
There are 13.9 million disabled people in the UK, but for many of them, you would have no idea anything is wrong.
This series is a look at what it’s really like to live with a disability or illness that no one can see, discussing the symptoms that affect their lives every day and how they are treated when they are out in public. She explains: ‘I really struggle with the friends who say, with complete innocence and good intentions, ‘you look fine to me!’ after I’ve had surgery.
‘Having friends who cheerily say ‘I wouldn’t have noticed!’ and ‘what are you worrying about?!’ just makes me feel like I’m unjustified in my feelings of intense self-consciousness. ‘I definitely did have something wrong! I genuinely smiled through tears as my dad told me, at a cafe in Waterloo station. He had to do it because for some reason my GP didn’t think to call me.’Pilocytic means the cells are elongated and hair like.They are also unlikely to return after being surgically removed.
Grace works in retail and as a freelance writer but admits that her condition can still have an effect on her every day.‘I get frustrated by how little I can do, work-wise – I only work part-time, just a few hours each week, and even then I get easily overwhelmed and exhausted.‘It’s been a long process, recovering from my surgeries and treatments; as they say, it’s not linear, and while you might feel strong and 100% capable one day, you might be slow and stumbling a little the next.
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