'My eating disorder led to osteoporosis at age 26'
After struggling with anorexia for 10 years, Jess McCaul finally managed to get the help she desperately needed - but was then dealt a further health blow, writes Arlene Harris
At 26 years old, Jess McCaul should be in the prime of her life but instead her life has been dogged by not one but two debilitating conditions — 10 years ago, she developed an eating disorder, which took a huge toll on her life and eventually caused her to be diagnosed with osteoporosis, a condition which usually affects the elderly.
“I developed symptoms of anorexia when I was about 16 as I had been badly bullied when I was younger,” she says. “I was stressed about life, struggling with anxiety and just looking for a way to control the world around me which felt uncontrollable and scary.
“Before long, my whole life became affected and I failed one of my final year college exams because I was so poorly. But after repeating the exam [in digital marketing] I eventually managed to graduate two years after the rest of my class, which left me isolated from my friends.
I was afraid to go out and do things with them because, more often than not, these outings would involve food so I stopped going and lost motivation for my blog, work, everything — it was if I was in a relationship with my eating disorder.”
Jess, who works as a cinema supervisor, says not only did anorexia affect her life, but also those around her.
“My family suffered because of it and everything became a fight as they tried to get me to eat outside of my ‘rules’,” she says.
“I feel tremendous guilt for what I put them through. I was a nightmare to live with and while sometimes there’s still an argument or two, I hope they realise now that it’s not me but the illness. My mum did everything she could to help — but there was a major strain on the family.”
With the eating disorder holding her in its grip, the Longford woman became aware that she needed help and due to ‘human error’ didn’t end up being seen professionally for over a year. Then found herself in a bizarre situation as she wasn’t deemed ‘sick enough’ to be admitted to hospital.
“I first tried to get inpatient treatment in 2016, but the referral got lost and I didn’t end up going for a hospital assessment until December 2017,” she says.
“This was a couple of weeks after we found out I had developed osteoporosis in my spine and osteopenia in my hips. The hospital wanted to admit me straight away but my team applied for HSE funding [in January 2018] and this was refused because my BMI [body mass index] was considered ‘too high’.
“This was quite a shock and I felt like I wasn’t ‘sick enough’, that I would never get the help
I needed and I would be stuck in this cycle for the rest of my life. The outpatient treatment kept me afloat, but I was so entrenched in the behaviours and the rigidness [of the eating disorder] that I knew I needed inpatient treatment and 24 hour support. I was upset and felt like it was a life sentence.”
Devastated by this turn of events, Jess’s condition became worse, which eventually led to her being hospitalised.
“I knew I wanted more from life so I got in contact with Jim Daly [Minister for Mental Health and Older People], who put his office onto it and they eventually came back and just repeated what I already knew and some more,” she says. “So I became frustrated and upset and my weight plummeted.
“I spoke with my local team, who said they would apply again for HSE funding and after a lot of fighting on my side and jumping through every hoop, funding was eventually approved and I was admitted to hospital on Easter weekend 2019.
“No one wants to go into hospital, to check out from life but I was already checked out and wanted to put my health first so I dived into the programme with hope that this would help make me better. And it has. It was worth every tear, argument, phone call and email to get there.”
The programme lasted 12 weeks, but it was recommended that Jess stay in hospital for a further fortnight — and she says it has been all worthwhile.
READ MORE: Mind your bones: How to prevent osteoporosis
“It was intense, exhausting and upsetting but it was also life-changing,” she says. “Every day I attended sessions for body image, meditation, CBT [cognitive behavioural therapy], art therapy and cooking — while also seeing a dietitian. It was like a boot camp for eating disorders. I learned so much about myself — how to be vulnerable, how to laugh again, to be less rigid and obsessive and most importantly, I began to learn how to eat again. I ate foods I hadn’t touched in years that I had convinced myself I didn’t like.
“Medication also played a part — I was prescribed something to help reduce my anxiety around mealtimes, which helped massively.
“But the biggest help was the group support and knowing I wasn’t alone — they understood things about me that I didn’t even know yet. They helped save my life.”
But while she was dealing with the enormity of an eating disorder, the young woman also had to cope with a diagnosis of osteoporosis and its impact on her life.
“The osteoporosis came as a shock as I had no symptoms and no reason to believe I had even damaged my body,” she says.
“My blood was generally always fine, with the exception of a lack of iron, and despite low body weight, I was physically well for the most part. But I hadn’t been having regular periods for some time so as I was a low weight, my counsellor suggested asking my GP for a DEXA bone density scan. I didn’t even know what this was, or that my bones could become impacted by anorexia. The hospital didn’t want to scan.
‘Being admitted to hospital was intense, exhausting and upsetting but also life-changing. Every day I attended sessions for body image, meditation, CBT, art therapy and cooking — while also seeing a dietitian’ me initially as they thought I was too young, but my GP convinced them otherwise.
“So I went for the scan, convinced it would be fine — I was resilient, young and every other test had always come back OK. But it wasn’t OK, I got a call from my GP to come in to discuss the results and I knew it was bad. It was the worst news possible; I had osteoporosis in my lower spine, was high risk for fracture and my hips have onset osteoporosis. I’m 26 and anorexia has destroyed my bones. I was devastated and angry and felt if had received inpatient treatment sooner, this would have been avoided, or at least the severity would be lessened.”
According to the HSE, one in three women and one in five men in Ireland will develop osteoporosis in their lifetime. It is more common in those of Caucasian and Asian descent and in some cases it may be hereditary.
But there are definite risk factors which include smoking, drinking too much alcohol and being underweight.
“If you have a low body weight you are more likely to have less bone tissue,” says a spokeswoman for the department.
“This can occur mainly through poor dietary intake of nutrients required for normal development, particularly as anorexia can affect young women at a critical stage in skeletal development but also as a result of low body weight and reduced muscle mass.
“Adult patients with anorexia are at risk due to poor nutrition but also due to affected women experiencing cessation of menses secondary to the poor nutrition, this has a direct impact on bone formation. So, postmenopausal women in general, and women with anorexia whose menses have ceased, will have an increased rate of osteoporosis.”
The longer that the patient remains at a low weight the more likely they are to experience osteoporosis, says the spokeswoman.
“In some cases, particularly in older women, presenting with a fracture is how their anorexia is diagnosed and the treatment is to restore body weight. Bone strengthening medication is used to treat patients who have chronically low nutrition with bone loss and can reduce the risk of fractures.”
Jess receives this medication and while she is getting stronger every day, says the mental scars are harder to heal — but she is hopeful.
“My GP told me that my osteoporosis was because of the anorexia, which is quite common with this illness, especially when periods stop,” she says.
“I get an injection every six months to help preserve my bones and my health is much better than it was a few months ago.
“My blood pressure has stabilised and my weight is restored so I feel physically better but my mind is still trying to catch up as weight restoration is something I struggle with — but I’m hopeful that I’m at the last hurdle and that life is just beginning.
“My advice to someone in the same position as I was, is to get help sooner rather than later.
I waited too long so the work was harder as my illness had a firm grip on me. No one deserves to be miserable, cold and obsessive. Think of everything your illness promises you — and now think of everything it’s stolen and will continue to steal.
"You’re so much more than your disorder, but you have to do it for yourself."
Follow Jess on Instagram @JesskaDenise
For medical advice, visit hse.ie; bodhwhys.ie and seechange.ie
Health & Living