Health researcher Sally Hatton, 30, explained how her condition – which leaves her with bone and muscle pain on a daily basis – is not always visible and results in her being challenged by strangers
A woman with a rare bone condition has opened up about being rudely challenged for her priority bus seat and receiving odd looks because she had no apparent illness.
Sally Hatton, from Urmston, Manchester, suffers from constant pain on a daily basis and has impaired mobility after being diagnosed with X-linked hypophosphatemia (XLH) at the age of 18 months – causing her bone and muscle pain and weakness, stiffness, fatigue and an increase causes risk of breakage.
It’s a condition that has left the 30-year-old “shy and alone” for most of her life, but something that hasn’t stopped her from receiving rude comments from others who Manchester evening news reported.
The health researcher has revealed that she was often challenged by strangers for taking the preferred seat on public transport or for putting her feet on a cushion on the train.
She said: “I particularly remember being rudely challenged to use the priority seat on the bus a couple of years ago and recently being asked by strangers why I had to put my feet on a cushion on the train.
“The elderly lady who got on the bus attacked me for sitting there and said, ‘You’re fine.’ I think at first I offered to move, but then I thought, ‘I have a reason to be sitting here.’
“I explained that I had a problem and she was quite angry and didn’t want to talk about it and sat nearby. People can’t tell something’s wrong, so you feel like you have no right to ask for help.
“It’s hard because when I’m traveling I’ve had to ask for help before and people take a second look.”
Sally is sharing her story as part of pharmaceutical company Takeda UK’s I’m Number 17 campaign to raise awareness of rare diseases among the medical profession and the general public alike, asking them to be ‘kind’.
“Society can have very fixed ideas about what a ‘healthy’ person should look and be like, and what a ‘sick’ or ‘disabled’ person should look and be like, and if you don’t meet that expectation you can easily be treated as ‘weird,'” added Sally.
“The older I’ve gotten and the more my condition has gotten worse, the more I feel that I am entitled to help. But I try to make the best of it and not feel too negative about it.
“It’s hard to say, ‘There’s actually something wrong with me, I’m in pain and I need help.’ My pain is mild but constant; There is never a day off, never a day without pain.”
Symptoms of XLH can vary, but the most common is bending of the legs, which can affect a person’s ability to walk.
Sally opted for surgery when she was 17, which meant both of her legs were broken and reset to adjust her shape – requiring her to spend months in a wheelchair and a bed frame and learning to walk again.
Years later, she underwent another operation that placed metal plates in her legs, but complications arose and they had to be removed.
Sally has had four surgeries in total, the last at the age of 26 after breaking her leg after hitting a radiator.
While her condition is sometimes visible, she only actually mentions it when it needs to be discussed in conversation.
https://www.mirror.co.uk/news/uk-news/woman-rudely-challenged-using-priority-26511993 Woman is rudely challenged for using priority seat on bus - and they were wrong