How Should We Talk About Eating Disorders In Adulthood?

10.10.19

My first understanding of eating disorders came from school. Unfortunately, an all-girls private school is the perfect environment for an affliction like Anorexia to flourish. I still have upsetting memories of a student returning to campus after extensive treatment with a small tube in her right nostril and thick fluff covering her forearms – it was a lot for my thirteen-year-old self to make sense of. I’m not saying eating disorders are limited to teenagers of a certain socio-economic group (this is a mental illness that statistically do not discriminate), but there’s undoubtedly a psychological trigger that is pulled when a young girl finds herself overwhelmed by a pubescent body she doesn’t recognise and cultural expectations of beauty that didn’t exist for her only a few years prior.

I hadn’t given much thought to this topic in adulthood, mostly because it’s not something that we see or talk a lot about; discussions of Anorexia are almost always limited to girls under the age of 18 and diet culture in general conflates thinness with wellness. And yet, in the past two years The Twenties Club has been contacted by more than a handful of women, most in various stages of ED recovery, who have all pointed out just how limited the resources are for adults. I’ll admit that I told most of those women that I didn’t want to explore this topic on TTC; I worried how triggering it might be for people in recovery to read about the experiences of others and it terrified me that I could end up inflicting more harm than good. But it was a conversation I had with a young woman named Caitlin, and later with her sister Julia, that taught me how backwards I had it – that, in fact, opening up a dialogue around this universal affliction can be incredibly helpful for both those who are suffering and those holding the sufferer’s hand.

Caitlin (30) had always been very particular about food; she became a vegetarian when she was 12 and switched to veganism when she was 14, “But it wasn’t until I found myself dealing with a sudden change in environment two years ago that my illness was triggered and I lost an excessive amount of weight within a few short months. I was clinically diagnosed with Anorexia Nervosa in June last year at the age of 28.” One person who played an integral role in getting Caitlin the diagnosis that set her on a path towards recovery was her sister Julia (31): “I knew from day dot what was going on, even though Caity continuously denied anything was wrong. Aside from her weight loss and restricted eating habits (which are only the top layer to much deeper issues anyway) I could see the anxiety she felt around food, the way she was removing herself from almost all social situations and that she had given up a lot of her typical everyday rituals – for Caity this was foregoing her glass of red wine each night.”

Through my conversations with both Caitlin and Julia, I quickly learnt that this “denial” isn’t in fact the person lying about their problem, it is their genuine belief and a result of the way AN impacts brain function to impair insights and awareness. Julia told me that she could see Caitlin didn’t believe she was unwell and that’s why she pushed back so hard – a sentiment reiterated by Caitlin: “I truly never thought I was sick enough; not sick enough for treatment and certainly not sick enough for the humiliation of admitting I needed help. Even when my hair was falling out and I needed to take eight showers a day to regulate my body temperature. Even when my short-term memory had disappeared and I was fainting all the time. It wasn’t until I had been diagnosed and assigned a treatment plan that it became easier to see my declining health and talk about what I was feeling.” Another way Caitlin could deny to herself the severity of the situation was that hardly anyone in her community raised their concerns with her: “One thing that struck me was that aside from my family and very close friends, no one brought up my declining health or rapid weight loss. My workplace was incredibly supportive of my situation, but even they admitted that they didn’t know what to say and were afraid of making the situation worse. In a way this fuelled my “I’m not sick” rhetoric, because I believed that if I was really sick then people would say something – and they didn’t.”

Once Caitlin had been clinically diagnosed by NZEDC and decided on a form of treatment that suited her and her values (Caitlin’s treatment was an evidence-based program called ‘MANTRA’ which dove into medical and scientific research on the disease), the real work of healing her body and re-wiring her brain began. To me, it seems as though one of the clearest distinctions between Anorexia in childhood and Anorexia in adulthood is the significance of the patient’s desire to get well; when you’re an adult there is no parental figure who can legally force you to undergo treatment, therefore the patient must want it for themselves, “It only works when you are ready to commit – I had to want to recover.” Not to mention the unique pressures that come with adulthood like fulfilling job requirements, maintaining or pursing romantic relationships and protecting your financial stability. Caitlin said, “Your brain matter shrinks during Anorexia Nervosa (thankfully this damage is reversible providing you achieve full nutritional rehabilitation) and during treatment my doctor showed me MRI scans of brains with Anorexia Nervosa and those in full health to illustrate the difference. This is another reason why managing your recovery as an adult is so challenging because you are cognitively impaired – I have no memory recollection of two and a half months from the past year.”

For readers who want to support a loved one or raise their concerns, Caitlin said to keep it simple and begin with gentle questions that ask how the person is feeling, “Then, if you’ve noticed any disordered behaviours like a regression from social events or visible discomfort when a meal appears unplanned or not as expected, don’t shy away from mentioning specific examples. This makes it harder for the eating disorder to deny itself.” I’m going to interject here – you may have noticed how Caitlin discusses her Anorexia as if it’s a separate person or entity, and Julia said that this is an important distinction to make: “Anger, frustration and retaliation aren’t signs that the sufferer is going to walk away and never speak to you again – although this is often how it feels. Instead it is the illness speaking, not your loved one. They will come back to you with time.” For Julia, it was also important that she took care of herself, “It’s really important as a support person to have your own support network. I was beside myself with desperation, sadness and worry about what would happen to Caity, so having my partner and close friends as my own support team was invaluable. Monitoring Caitlin’s ongoing recovery is challenging for both of us, as the illness doesn’t end with achieving weight restoration but rather involves unearthing complex, psychological layers that continue to prevent a person from eating normally.” She added, “I am hyper-aware of Caitlin’s weight and any changes in her behaviour. Even when she gains weight it can send me into a spiral of thinking “Is she going to try and lose this progress next week?”. So it is a constant challenge for me to control my thoughts and not jump to conclusions as this isn’t what she needs. My advice is to focus on the positive steps and celebrate the small wins.”

It only seems right to let Caitlin’s words finish this article: “My doctor once told me that recovery is the hardest thing a person will ever do, and he wasn’t wrong. He often used the analogy of someone who has a phobia of spiders: for those recovering from a restrictive eating disorder, you are essentially asking them to sit in a small, dark room filled with spiders six times a day until that anxiety and fear dissipates. I’ve been in active treatment for eighteen months now, I recently hit weight restoration, I still have routine check-ups with my doctor and I look forward to the day I don’t have to see him again (in the nicest way possible!) and while this process does not happen overnight, I am slowly regaining my identity which is an incredible experience. I feel free again.”

For additional resources for carers, patients and professionals, please visit the Resources Page at NZEDC.
If you need to talk, please call or text 1737 at any time for support from a trained counsellor at the Mental Health Foundation.

Header image by Holly Burgess for The Twenties Club