As many of you will know, raising awareness about mental health in general, but particularly eating disorders, is something I feel really passionately about.
I recently asked across my socials if anybody had any questions about eating disorders and got a pretty good response, so I’ve collated them here! I have had anorexia on and off for a very long time but have also been diagnosed with bulimia and OSFED (purging disorder) in the past, so I will try to answer all the questions as best as I can from my own experiences.
What are your tips for when struggling to understand hunger/fullness signals?
This is an interesting one. I think something a lot of people don’t realise is that when you are starving, after a period of time your body stops sending physical hunger cues (rumbling stomach etc) because it doesn’t have the energy to. Because of this, often people with restrictive eating disorders don’t experience feelings of ‘hunger’ (although mental hunger – an obsession with food – is very much present). When bingeing behaviours are also present, those hunger cues can be even more distorted. As a result, feelings of fullness can also become very distorted. If you eat very little, you will feel full very quickly, and if you binge your perception of feeling full may be skewed. Added to that the phenomenon of ‘extreme hunger’ (an insatiable hunger that feels endless) that many of us recovering from anorexia experience, the whole hunger/fullness situation can be a bit of a mess. Now my hunger cues are still a bit all over the place, but my biggest tip is just to eat at regular intervals, whether you feel hungry or not. Your body needs to get used to be nourished again, and that’s how it will come out of starvation mode. With regards to fullness signals, I still very rarely feel hungry which means I feel very full as soon as I eat anything. Non-disordered people will be able to identify when they are full and decide to stop eating at that point, but we don’t really have that luxury in recovery. I portion myself what I know is the right amount of food based on its nutritional value, and I eat it until I have finished. Yes, it is uncomfortable, but I can’t trust either my brain or my body yet to make those decisions for me. Grab a hot water bottle, some distractions and some comfy clothes and buckle up for the ride.
How would you describe having anorexia?
The best analogy I can think of is that it’s almost like being in an abusive relationship. Initially it feels warm, friendly and comforting and makes you think you can trust it and that it will make you a better person. It praises you each time you do what it wants and improves your self esteem. Over time it becomes manipulative, suffocating and horrible. It calls you names, you have a constant hateful internal dialogue and your self worth plummets. Despite that, you then feel completely trapped and as though you can’t leave because it isolates you and shrinks your world down until you feel like it’s all you have.
What’s your number one tip for those of us who don’t have an eating disorder? How can we at the very least do no harm, and at the most be useful?
One of the most important qualities you can offer anyone with an eating disorder is patience. The recovery process is long and painful, and many of us require a few cracks at it until it sticks. This one is incredibly hard to do I know, but try to separate the person from the eating disorder. A lot of us become people we don’t like when unwell and anorexia can make you think that it’s all you are, but we are still in there somewhere and we need you to hold the hope for us that we can come back. Don’t make assumptions that somebody’s weight in an indicator of how severe their eating disorder is, and please please don’t make comments about their weight or appearance. A listening, non-judgemental ear is sometimes all we need.
What is going well with treatment, and what would you improve if you could?
I would say most of it is going well! My experience of the service this time around (and last time I had treatment there) has been overwhelmingly positive overall. There are some very dark days but the staff are all incredible, the therapy groups are so useful and the programme is very recovery focussed. One thing I would change is how long the service runs for – currently it’s on reduced hours due to staffing levels and there have been a lot of evenings where I could have done with some extra support and not been able to access it.
What changes does your body go through and how does it affect things like sleeping and energy?
One of the groups I went to last week said that over 50% of people with eating disorders are thought to have sleep difficulties – I’m surprised it’s as low as that to be honest! I am not sure on all the science behind it but my personal experience has been that my sleep has been severely affected. Initially I had so little energy that I was exhausted and asleep all the time, but as you starve further your body can actually keep you awake because it wants you to go an seek food. That, compounded with significant anxiety, meant that I slept very little for a long time. In terms of other changes, your metabolism decreases, your hair falls out and nails stop growing, you can become infertile and develop osteopenia/osteoporosis. Skin can get very dry, there are a myriad of dental problems associated with eating disorders and you can grow fine hair all over your body as a way to keep warm. Bowel/digestion problems are very common. Ultimately, you could die.
What are the wrong things to say to somebody when trying to be supportive?
Any comments about their weight should either be off limits or very carefully considered first. Phrases that simplify the illness such as ‘why can’t you just eat’ etc are very frustrating. Try not to make them feel guilty for how they are behaving, eating disorders are already associated with huge amounts of guilt as it is.
What is it like to receive comments on your body when you have an eating disorder?
Honestly it’s a lose/lose situation which is why I have written about this topic before. If you tell me I have gained weight I cannot even begin to describe the feelings of hatred and panic that will be generated. Alternatively, if you are struggling with an eating disorder, any comments about having lost weight will only feed into that. The adrenaline rush that is produced from being told you’ve lost weight when restricting is addictive. Even neutral comments are difficult. I can’t tell you a single person with anorexia who wouldn’t flinch at hearing the phrase ‘you look well’. Our minds are very good at warping what people say, and that comment, along with others in that field, will be translated to ‘you look fat’, regardless of what you meant when you said it. Having said that, recently I saw some friends who told me my hair looked thicker, my skin looked better and I looked happier. Those all made me smile and realise how far I have come.
How have people in your life been most helpful?
The most valuable thing to be has been that nobody has forgotten that Cara is still in there or given up hope for me, even when I’ve had none. My friends and family have all tried to organise activities that don’t revolve around food, my work have been incredibly supportive and my boyfriend has been there through every single moment of wavering motivation. So many people are rooting for me and celebrating my successes with me, and that makes all the difference.
In hindsight, what are the warning signs?
It’s hard for me to tell you what the initial warning signs were for me as that’s going back around 17 years ago. But as time goes on I learn more about each relapse. My warning signs this time around were a preoccupation with the gym, starting to skip meals, shrinking my repertoire of foods I would eat to a very small list, and thoughts to purge. This, combined with starting to weigh myself and measure my body more frequently became a slippery slope. These all developed into severe food restriction, purging behaviours and excessive exercise over time.
How are eating disorders developed?
Now I’m no expert but what I have learned over time from others is that there seems to be a school of thought that for somebody to develop an eating disorder they will have a predisposition to it. That doesn’t mean they will go on to have one, but that experiencing trauma, stressful events, family members with eating disorders etc can all be triggers for developing one. There are also certain personality types more associated with different eating disorders, and although this isn’t a blanket rule, there does seem to be some truth in it. There is some evidence that you are more likely to have an eating disorder if you have a family history too. My nan had anorexia, I am a textbook Type A personality and I developed anorexia as a white, academic, middle class teenage girl. I couldn’t be more of a stereotype if I tried.
What symptoms do you experience with anorexia? How does it affect you day to day?
I am going to be careful answering this as I don’t want to be triggering, so rather than talk specifically about myself I will give some generic symptoms of anorexia. They can include, but are not limited to: food restriction, purging, excessive exercise, laxative abuse, frequent weighing/measuring, low self esteem, poor body image, reduced concentration, increased anxiety, low mood, social isolation, among many more. The way it affected me day to day at my worst was a constant preoccupation with food, hours of what is known as ‘compensatory behaviours’, irritability, social withdrawal, complete exhaustion and just generally feeling completely miserable.
What do you wish people would say to you to support you during meal times?
The answer to this is probably going to vary person to person, but for me personally I don’t like having anorexia acknowledged at all whilst I am eating unless I initiate that conversation. I prefer to be as distracted as possible, so any conversations that can make meal times feel normal is ideal for me.
I know you don’t work with patients with eating disorders. Was your employer easily accommodating?
Yes, it was never ever a question really. I have an incredibly supportive team and manager. I am still expected to supervise people who work directly with these patients and I am part of clinical discussions, but I don’t do any direct face to face work myself.
What’s the best way to support a friend going through treatment? Are there things I shouldn’t say?
As I’ve mentioned before, just steer well clear of anything appearance related. The best way to support a friend is to be invested in their recovery, be there for them and don’t give up on them, even when they may have given up on themselves.
Are there any good books you’d recommend for helping with eating disordered cognitions?
I cannot recommend Rehabilitate, Rewire, Recover by Tabitha Farrar enough. It’s an incredible book and it feels like it gets everything about anorexia. Janet Treasure books are excellent too.
Do you believe people ever fully recovery from eating disorders?
This is a difficult one. I am going to say yes because so many people have told me that they have fully recovered. If the question was do I feel that I will ever fully recover, then I would say no, I don’t. I think I can be well, but I don’t think it will ever completely leave me.
How can I be more conscientious with my language?
Just in general I would say be very mindful when discussion weight loss, diets, exercise etc, as people are silently fighting eating disorders all around us.
In terms of recovery, how do you remind yourself that you want to get better when things get difficult?
At the moment I have an amazing treatment team holding me up, which is making a world of difference. I have the most incredible support network around me and I don’t want to let them down. I try and remind myself of all the things I can do while well: working, travelling, exercising for fun, spending – and genuinely enjoying – time with people I love. I can’t do those things when I am anorexic.
How did you recognise that you had an eating disorder at first? Did you seek out a particular type of treatment?
When I first started experiencing symptoms of an eating disorder I was about 11/12, so it was people around me who sought treatment for me through CAMHS. As an adult, I recognised that a lot of my previously used unhealthy behaviours were creeping back in, and that I was becoming preoccupied with food and my weight. I went to my GP and asked for a referral to the eating disorders service, and it was them who then decided my treatment pathway. The first time I had CBT, the second time psychodynamic psychotherapy.
What are your best tips to cope with weight gain? How do you get through poor body image days?
I’ll be honest, some days I don’t cope with it all that well. I guess that the ways I physically cope are by wearing loose fitting clothes and trying not to spend too much time in front of the mirror. Other than that, I try to remind myself of all the things that my body can do for me now that it couldn’t before, and repeat over and over again that my weight is the least interesting, least important thing about me.
Have you ever felt that a doctors attitude towards you changes with weight?
I don’t have a regular GP so I just see a different one each time I go which makes the experience pretty potluck. Overall I would say yes, doctors have been much less concerned and much more dismissive of me when my weight has been healthy as opposed to underweight.
What things are triggering for me to say?
I guess I’ve covered that a little, but any talk about food, diets, exercise, weight gain/loss etc can be really triggering to somebody with an eating disorder.
Thank you so much for all your amazing questions! If you have any more please leave them in the comments and I’ll happily answer them.