Talking About Sex When You Have A Life Limiting Condition
Talking about sex and relationships is tricky for many people, but it can be especially tough if you have a life-limiting condition like Lucy.
She has a severe form of Ehlers-Danlos syndrome, which affects her collagen.
It has caused organs such as her gut to fail, so she is fed through a tube. She also uses a wheelchair.
“We are still young people with wants, needs, desires, emotions. We all want a relationship,” she tells Newsbeat at her home in Essex.
A new set of guidelines is being published on Tuesday for staff working with young people who have life-limiting or life-threatening conditions.
It aims to help professionals such as doctors and carers support people like Lucy when they are exploring sex and relationships.
One of the biggest myths according to Lucy is that people like her can’t have sex.
“Anyone can have sex. There are ways around doing things and, at the end of the day, relationships aren’t just about sex. It’s about the whole emotional, the physical, everything that comes with a relationship.
“People don’t realise that. They think that if you’re in a wheelchair you can’t do anything at all, whereas you can.”
The 22-year-old from Essex hasn’t had a relationship yet.
“I don’t meet a lot of people, I don’t go out much. People are a bit scared of the wheelchair. They think you either can’t have sex or they don’t really want to talk about it with you because they’re embarrassed.
“They think because you’re in a wheelchair you can only be with someone that’s in a wheelchair.”
That is one of the many small things that people take for granted when it comes to dating, which can be a big challenge for Lucy.
“I can’t just go anywhere. I’ve got to make sure it’s wheelchair friendly. I can’t just jump out of bed and go out – it’s like military precision to get everything sorted just to go out.
“There’s so much medical equipment, I’ve got tubes and everything everywhere.
“I can’t just jump in bed and cuddle or whatever. I can’t just do that.”
Her condition also means she isn’t able to eat regular food.
“So much of social interaction revolves around food and I can’t join in with that. I can’t go down the pub and have an alcoholic drink because I can’t drink much at all.”
Lucy thinks young people in her situation don’t know how to ask for help because they’re embarrassed.
“Sex and intimacy is a taboo anyway without it being with a disability or a life-limiting condition. Nobody knows what to say, it’s difficult for everyone concerned.”
That’s where the team behind the new guide hopes to make a difference. It’s come from The Open University and the charity Together for Short Lives.
Lucy thinks professionals do need better training in this area.
“What would really help people like me is to have the professionals trained to give us advice, to know the legalities of it, to know the personal side.
“But also for there to be publications that actually give advice to young people.”
Lucy wants everybody to understand that “sex, relationships and intimacy with a disability or life-limiting condition is normal, because we’re still normal people”.
She says she would like to have a relationship.
“I don’t know whether it’d be able to be physical, but to love and be loved basically, to have that emotional support, just that someone that’s just for me and that would be quite nice.
“It’s finding the right person to look past all the medical stuff and see you for you.”