Linnea Dunne speaks to Lisa Murphy about why she had to launch GoFundMe to get help…
*TW: This piece contains references to eating disorders
“It’s about 50 times a day I’m getting sick at this stage. I’m taking laxatives every day, so many that a lot of the time, they don’t actually work,” says Lisa Murphy, who’s suffered from disordered eating one way or another for as long as she can remember. Her teeth are destroyed, her eyesight has deteriorated radically, and she doesn’t get periods. After more than a decade of battling the condition, she gave up hope of in-patient care through the HSE and set up a GoFundMe page to raise the funds for private care.[restrict]
“I’m always exhausted, always have scratches in my throat and blisters in my mouth,” says Lisa. “I’m constantly in physical pain and the emotional pain is very bad as well. I’m so lonely and crying every day. Half the time I can’t believe my body is still going after over a decade of this abuse, which is really what you have to call it.”
On the other hand, she says, it’s all part of a routine. “Sometimes I’ll be doing all these horrendous things to myself in the bathroom and come out going, ‘alright, that’s it done now’. Then two hours later, I’ll be hysterically crying. It’s all extremes – either I’m totally numb and unable to process it or I’m hysterical. The only way I can describe it is it’s like a storm, like I’m right in the eye of the hurricane.”
All Lisa’s childhood memories are tainted by self-hatred and an obsession with food. She has memories of attending birthday parties, hiding loads of sweets and junk food and going off eating them in secret. Throughout secondary school, it continued and she was often on fad diets. “The diets started to get more extreme as I approached 18,” she says. “Then I went to college and the availability of junk food was a real issue. I started binging and put on what for me then felt like a lot of weight, so I panicked and started over-exercising – I’d be at the gym every day, sometimes twice a day.”
She was 19 the first time she made herself throw up – something of a turning point or key event, in her mind. “The thing about eating disorders is that you kind of go along for a while thinking you’re in control of it, that you’re choosing to do it. But it gets to a point where you’re trying to stop and you can’t. That’s where I’ve been for the last few years. I feel totally and utterly in the grips of this monster. It feels like it’s happening to me as opposed to me doing it.”
It was the purging that became the red flag that first made her try to get help – though, she reflects with hindsight, she wasn’t ready for it then. “I told a friend who mentioned a support group, I got counselling through UCC and my parents were able to pay for outpatient CBT treatment – but when you’re in that mindset, you’re not open to getting help,” she explains. “I’d be sitting in front of the therapists thinking this was the best thing ever.”
With the economy taking a downturn and her family struggling financially, the private health insurance went, as did the option of paying privately for talk therapy. At the same time, Lisa’s problems were intensifying. That’s when she first sought help through the HSE. “I was 21, I think. I’m 31 now. It’s been the same cycle ever since,” she says. “What tends to happen is either I’ll end up in A&E over some form of self-harm or I’ll be referred directly to the consultant in whichever catchment area I’m in at the time. I wait a few weeks, get an appointment with them, they do their assessment and put me on a waiting list for outpatient therapy. Then I wait up to a year, maybe more, at which point I’m constantly onto them begging for help. But the answer is always that they’re sorry but they don’t have the resources.”
The funding of eating disorder services in Ireland was under the spotlight earlier this year, as it emerged that none of the funding originally allocated to the development of eating disorder services last year was used as such. The funds were instead diverted to cover the cost of other services. Similarly, only a tiny portion of the €1.5m allocated to eating disorder service development back in 2018 was spent. On paper, in addition to treatment from local community mental health teams, adults with eating disorders should be able to get in-patient care at one of the HSE’s approved centres, at a private facility or in an acute hospital, if deemed necessary.
In reality, once Lisa – whose GP and other healthcare practitioners have agreed she needs in-patient care – got to the top of the waiting list, the care available was only ever an hour’s therapy a week. “I’d come out after an hour and I’m back in this crazy life and I can’t control it. It feels a little like someone’s putting a plaster on a broken leg, and I can’t engage. I just feel totally alone,” she says. “I’ve had consultants tell me I’m not motivated enough. That’s the most devastating thing I’ve heard in my life. I’m screaming out for help, but the help is so inadequate, and then it’s my fault because I can’t engage in it? I’m more traumatised by the services than I’m helped by them.”
By this time last year, Lisa was, she says, “spending more time in A&E than I did at home”. That’s when, between desperately hysterical calls to the local mental health team, begging for an appointment and waiting for another referral to get her a place on an intensive, hands-on programme, she sat down and wrote a ‘day in the life’ of what she was doing to herself – an attempt, she says, for her to see it on the page, to look at it and make sense of it. Then, on St. Patrick’s Day this year, she called the mental health team and said that she was going to commit suicide. “The person on the phone just said, ‘OK Lisa, I’ll check in with you again in two days’. I was actually laughing on the phone. I was going to be dead, like! I was so really unwell I just thought the whole thing was hilarious.”
The next day, Lisa made a serious attempt to take her own life. “My dad drove up to Dublin in the middle of the night, absolutely shook. I’ll never forget his face,” she says. Her family knew she had an eating disorder, but no one knew how bad it was, because she’d cut everyone off.
In an attempt to help her family understand what was happening, Lisa showed them her ‘day in the life’. That became the start of a campaign to get her the care she needs. Terrified of the exposure, Lisa reluctantly agreed to let her cousin, Alison, publish the ‘day in the life’ account anonymously on Twitter, in the hope that something would change. It was picked up by a few newspapers and a few TDs raised the issue in the Dáil – but nothing happened.
The idea of setting up a GoFundMe page to raise funds for Lisa’s treatment privately came up, but Lisa felt too raw at the time. Instead, her friends rallied around her, planning fun events and staycations. A month or so ago, on a weekend away with two of her friends, she had a complete physical breakdown. “I couldn’t move. I was just lying on the couch and my body shut down completely. I could hear the girls but couldn’t even respond. They got a real fright – at one point they thought I was dead,” Lisa explains. And then, realising she had nothing left to lose, she agreed to set up the GoFundMe page.
“I’m finally seeing a clinical psychologist now, for 50 minutes once a week. She’s lovely and very dedicated to her work, but I’m sitting there and she’s talking about meal plans. Spend 24 hours with me and you’ll see that’s impossible,” Lisa explains. “When you’re nutritionally deficient, in so much pain and life is so chaotic – being able to engage in therapy cognitively, it takes a lot of effort, and I physically and mentally can’t do it.”
Instead, the hope is for Lisa to attend a 12-week programme at a treatment centre in Dublin, at a cost of €60k. As an in-patient there, she would get intensive support every day through group sessions and daily meetings with a psychologist, in an environment where she can’t self-harm, where there’s no access to laxatives, and where there are always nurses and mental health workers around. “If I could give my body a break,” she says, “I mean it’s the most terrifying thing I can imagine, just the idea of eating food normally, so I can’t think about it too much – but I’m putting all my energy into getting the money, and then the hope is it’ll open up that ability to think clearly again so that I can get myself out of this.”
And in a heart-warming show of generosity that saw more than 1,300 people donate to exceed the crowd-funding goal in less than a week, it looks like she’s getting that chance. “I would be lying if I said I wasn’t terrified of the difficult road ahead,” she wrote on Twitter on Friday afternoon, when the fundraising target was reached. “But the fact that I even want to try is a miracle. The words ‘thank you’ are not enough, but they are all I have. I mean it from the bottom of my heart.”
A part of her, she says, is blaming herself, thinking it’s her own fault that things got so bad, but another part of her feels really let down by the services. “I’ve called them in absolute hysterics, I’ve gone in in hysterics, I’ve brought friends into meetings with the consultants, begging for help. It’s upsetting to think that, God, if the appropriate care had been given at the right time, I wouldn’t be here now,” she says. “I think a review of the mental health services system with a focus on patient-oriented care is required. The fact that we invest much less in mental health relative to other countries suggests that mental health is an afterthought than a priority, and we urgently need that to change.”
With Budget 2022 bringing an announcement of an additional €1.15 million for the continued roll-out of specialist eating disorder teams in community healthcare organisations, whether or not change is on the horizon remains to be seen. This week’s crowd-funding success is nothing but amazing news, which might help to restore your faith in humanity. But the fact remains that Lisa has been suffering for years, as have many other people like her. They shouldn’t need to – and GoFundMe shouldn’t be the solution.
If you want to contribute to Lisa’s fund, which is still accepting donations, you can donate to and follow the GoFundMe page here.
If you’re struggling with disordered eating, contact BodyWhys for advice and support.