“The easiest way to describe it is like a minefield.”
*Warning: this story contains details of anorexia, compulsive eating, and ED treatments.
Last year, Jess went for bone density scan.
Tests like these aren’t usually offered to young people in Ireland, and her GP had to fight to get her one.
Jess was diagnosed with osteoporosis in her spine and osteopenia in her hips. She was 25-years-old.
“It happened because of the anorexia,” she says.
“When the results came back, I was in bits. I still find it very hard to believe.
“People, especially young people, don’t know that this is something that can happen to your body because of an eating disorder, this long term physical effect.”
“Life is long and to know that I have to be careful forever is upsetting,” she says. “I’m worried about it getting worse.”
Jess says that her anorexia started becoming a real problem four years ago – before that, not many people noticed that she had it.
She started struggling with disordered eating when she was in secondary school, but over the past few years her weight started to drop dramatically.
“It’s been a constant thing in the background,” she says.
“No one kind of realised until they could see it, when it became visible. And that happened in a very quick space of time, about six months.
“My mum started panicking and people starting noticing.”
Jess describes her every day life as a minefield.
Her osteoporosis means that she’s at high risk of a spine fracture, so she needs to be careful that she doesn’t fall, or move the wrong way.
She’s in a constant battle thinking about food – what she had to eat earlier, and what she might eat later.
She calculates calories and treats them like currency. “It’s like I’ve been given €20 and I need to spend it wisely,” she says. “It’s something I think about constantly, every day.”
“It complicates my friendships because my friends try and avoid it.
“When we go up to Dublin from Longford, they won’t go for something to eat even though they want to. I’ll say I don’t mind and I’ll engage in conversation. I’ll just sit there.”
Earlier this year, Jess was rejected by the HSE for funding for a 12-week inpatient stay in St John of God’s Hospital.
She received a letter stating that although the HSE was eager to meet her “complex needs”, she would not be able to receive funding because her BMI is too high (the HSE stated that a BMI of 13 is generally the level at which people are admitted to inpatient care. They did not respond to a request from Her for more information regarding any other requirements for treatment funding).
She questioned why this funding was rejected and was given the same answer just last week.
The St John of God’s specialist eating disorder programme has been running for 20 years and includes a psychiatrist, psychologist, social worker, nurses, and an occupational therapist to provide round the clock care.
Jess says this is what she needs – constant help in a dedicated treatment programme. But she can’t afford it without funding.
“If I was to look at it from the outside, it’s very difficult for my family to do for me what a stranger in inpatient care could do for me.
“There’s someone always there with you and that’s what I need. They live and breathe eating disorder treatments, they know what they’re doing.”
Being rejected for funding two times in one year triggered a massive part of Jess’s anorexia.
When her BMI dropped to what she calls “crazy levels,” she couldn’t avail of treatment. And now that her weight is deemed “too healthy,” she can’t either.
“I’m confused,” she says. “When I was physically ill they weren’t doing anything, and turning around now and saying that I’m not ill enough doesn’t make sense.”
“They told me that they don’t know if the treatment would work for me so they don’t want to put the funding on me. I thought that was ridiculous.”
Jess says that she wants eating disorders to be treated like mental illnesses when it comes to inpatient treatment. Anorexia isn’t defined by weight loss, she explains, it’s just one of the symptoms.
“If I had schizophrenia or OCD or something, they might be able to see that, but a lot of my symptoms aren’t physical.
“That shouldn’t fall into it, it’s a mental illness. But they don’t see that, they just see the weight.”
Over the past few months, Jess has been in contact with Minister for Mental Health, Jim Daly to try and move things forward. She has become an ambassador for See Change, attended regular counselling sessions, and worked with a dietician.
Above all though, she’s been trying to make her voice heard.
“They don’t want to listen,” she says. “And I’m having to fight for something I shouldn’t have to fight for.”
If you have been affected by any of the details of this article, you can contact Bodywhys on 1890 200 444 or email [email protected].
November is Mental Health Month on Her, where we’ll be talking to you and the experts about some of the common – and the not so common – disorders and conditions affecting women in Ireland today.
You can follow the rest of our Mental Health Month series here.
Want to get in touch? Email me at [email protected].
