The rest of the iceberg: putting your life back together
When I was ill, my entire life revolved around the illness. Even while I was going through weight restoration, my life revolved around recovery in a similar way. I was still obsessively calculating numbers, creating meal plans, tracking my weight changes, spending hours pouring over recipes and food blogs, feeling terribly anxious about whether my jeans felt looser or tighter than the day before – the only difference was that I was trying to gain rather than lose weight.
Half of the time I was terrified that things would never change, and I would spend the rest of my life at a healthy weight but still obsessed with food and numbers. The other half of the time I was terrified that things WOULD change. I had no experience of life without some form of mental illness – what the hell would I think about, talk about and do without anorexia occupying 99% of my thoughts?
I started to find out during weight restoration. One day I quite randomly picked up one of my pop-science books on astrophysics that I’d not gotten around to reading yet, took it downstairs, sat on one of the sofas in the conservatory in the sun, and started reading. Three hours later I was still reading. When I realised how much time I’d “lost” I was thrilled! During the worst period of my illness my concentration became so poor that I couldn’t read – I could identify the individual words but by the time I’d gotten to the end of a sentence I’d forgotten the beginning, and nothing seemed to make sense. By the point in my recovery where I picked up that book I had regained the ability to read newspaper articles, but finding myself totally absorbed in something so intellectually challenging and completely unrelated to food was wonderful. Looking back at the post I wrote about it (I was THAT excited!) I think I was about 8-10 weeks into weight restoration, and from then on this started to happen more and more frequently. I made jewellery, went out for long drives in my new car whilst singing over-enthusiastically along with the radio, met up with friends for coffee and started my new Open University physics module.
Things were still not perfect, but they improved fairly consistently the closer I got to my target weight. The biggest change occurred about a month after I had reached it, when I stopped counting calories and weighing my food. Up until that point, although I had found myself able to concentrate for increasingly longer periods of time, I was still spending a lot of time soothing my anxiety by obsessing about numbers – putting together endless combinations of ingredients which would add up to the *exact* amount of calories in my maintenance plan, counting and recounting my intake for the whole day, surfing blogs and forums dedicated to recovery to look at other people’s target weights and meal plans, and so on. When I quit weighing and counting I had no idea what to do with myself. A month later I witnessed a car crash which made my residual PTSD symptoms a lot worse for a few weeks, and without my numbers to calm me down I completely freaked out. I was having panic attacks several times a day, crying all the time, feeling like there was no point to being alive, dissociating – it almost became a full-scale breakdown. I had no idea how to distract myself or cope without resorting to food and numbers. I was so scared that this was it – this would be my life without the eating disorder. My body was healthy but I had not felt so chaotic and terrified in years.
This could have been the point at which everything fell apart. If I had convinced myself that I couldn’t cope without the eating disorder and had relapsed under the stress I don’t know how I would have found the courage to turn things around, because it would have strengthened the association I already made over the years of feeling unable to cope with my emotions and anxiety at a healthy weight. I could have easily ended up neck-deep in the anorexia again in a desperate attempt to stop my brain shrieking at me. Luckily that didn’t happen. Because I had put all of that effort into gaining weight, and I had only been at my target for around six weeks, I clung to the memory of what I’d told myself at the start of my recovery: I would give it everything I had, and if life was still crap in five years time I would be “allowed” to relapse. I certainly don’t think relapses are simple choices, but at this point I just needed to convince myself to hang on to my health for longer than the couple of months I’d been at my target.
Instead, I put all of my energy into learning how to cope in different ways. I discovered that I felt better when I was talking to my friends, whether online, on the phone or in person. While I whispered down the phone to Jonathan at 1am when everyone else in my house was asleep, or chatted to a good friend on MSN, the intensity of my anxiety decreased. I kept writing in my blog – if you look at my posts from March 2010 you will see that I wrote a lot about all the thoughts and fears which had suddenly appeared now they weren’t masked by the ED, and I tried to make sense of them. I dug out a workbook I had for anxiety and a DBT manual I had bought a couple of years previously, and started re-teaching myself mindfulness and crisis management techniques. I did my best to keep carrying on with my normal life, like going to my evening classes even if I felt sick with panic, and meeting up with local friends for coffee (or chamomile tea in my case). I didn’t find any answers to the crap in my head and I didn’t find one coping mechanism that could adequately replace the eating disorder – but then, how could I? The eating disorder plugged up gaps in all areas of my life, it had many roles and comforted me in many ways. What I needed to do in March 2010 was to start filling those holes in with the things that should have been there in the first place: friends, structure to my day, goals, relationships with my family, and healthy ways of coping with my anxiety.
The worst was over in a couple of weeks and gradually the panic attacks stopped. Six months later it happened again: in September 2010 I went through a period of a couple of weeks where my anxiety was sky high and I felt like I was going crazy. But this time the crisis didn’t last as long, because I knew what had worked for me last time. I remember sitting on a bench in Newcastle station on the worst day, feeling like I was at breaking point, dissociating and panicking. I spent a good hour trying to ignore all the people around me and running through every mindfulness exercise I could remember. It worked – I managed to ground myself and calm myself down. I was rather shocked.
But this is just how I have learned to cope during crises. On a day to day basis my life isn’t anywhere near that melodramatic! I do still have a lot of anxiety, but I am becoming increasingly adept at ignoring intrusive thoughts and taking care of myself. I don’t think it’s a given that all people with eating disorders will be left with some form of mood or anxiety disorder after recovery. I was because my anxiety had far pre-dated my ED – I had OCD and panic attacks as a child. I don’t think there is any great trauma behind this, I think it’s just my unfortunate genetic make-up, and I deal with it as best I can.
When I asked for ideas for this page, someone asked me what I think about now that the obsession with food is gone. There isn’t a simple answer – which is great, because there was a very simple answer to that question when I was anorexic – food and weight! Aside from the anxious thoughts which don’t really upset me much as long as long as I’m not under too much stress, I think about all sorts of things now. Ideas for my blog and voluntary work, plans for the future, Jonathan and my friends, current affairs, art exhibitions at local galleries, physics, things I could photograph or draw, what my family are up to, my counselling classes and prospective counselling foundation degree to begin in September…the list is endless. Food still makes an appearance sometimes, but usually in terms of “ooh, I’ve run out of cake, better do some baking” 😉
It wasn’t a sudden change and it didn’t all happen immediately after weight restoration. It took time for life to start filling up the parts of my head and my life that I had evicted the eating disorder from.
Along similar lines, after weight restoration I not only had to uncover all the parts of my personality the ED had squashed and learn healthier coping mechanisms, I also started working on sorting out my life. For a start, I had been in and out of education for six years and had been unemployed for eight. I had no idea what I wanted to do for a career, or what my options would be in getting back into work. So I decided to start with something simple. I picked up a catalogue of evening classes for my local adult education centre, and noticed that they taught a counselling skills course.
This was such a good decision, I can’t even begin to thank year-ago-Katie for making it! It was the perfect choice, because as you might expect, people wanting to learn counselling skills tend to already possess empathy for those with mental health issues. I gradually became more open with them and shared different parts of my story, and in a few weeks I had started making friends. These were the first group of people not bound by common mental illnesses that I had made friends with in years, so their acceptance and friendship meant a lot to me. This also gave me some ideas for my future, as I started wondering if maybe I would make a good therapist. I would really recommend the level two counselling course to anyone else in the UK who wants to meet new people but is shy or embarrassed due to mental health issues, because it was such a good intermediate step for me.
Another big help for me was looking for voluntary work. I had been out of paid employment for eight years due to either being in university or being ill, so I would have had no references and very little applicable experience if I had gone straight for a paid part time job. I first did some training for a local Rape Crisis phone line, but realised that I wasn’t sufficiently recovered from my own PTSD to cope with that. When I moved to Newcastle I quickly got myself involved with a local eating disorder charity, which worked out much better. I am one of the charity’s trustees now, so I go to their management committee meetings, and I go into local schools and universities to give talks on EDs to the students at every opportunity I get. There is some talk of setting up new support groups for carers and people in recovery too, and I am excited at the prospect of being a part of the development of these. I also helped run a ten week club for shy and anxious children for Barnardos. Managing to stick with both the voluntary work and my counselling classes has been a great boost to my self esteem, after years of dropping out of my education and life over and over. I don’t have a job yet, I’m not married and I don’t have children like many of the people I went to school with – but I am beginning to enjoy the little life I have created for myself, and I am continuing to expand it all the time.
So my social life and self confidence have both been improved by evening classes and voluntary work. But I had many friends while I was ill too – people I met on eating disorder related websites. One problem which many people with EDs (and substance abuse addictions, come to think of it) find when they recover is that some of their relationships are not entirely helpful to their goal of remaining healthy. It can leave you feeling really guilty, because it is horrible to feel like you are “dumping” someone because of an illness – especially if their health is very bad and there are a lot of medical scares going on. It is not in the nature of most people with eating disorders to put their own best interests before those of other people they care about, so trying to work out how to cope with unwell friends can be very challenging.
I worked it out on a person-by-person basis. When I first really committed myself to recovery I had to leave the ED websites I’d belonged to, because although they were supportive of anyone who was trying to recover, the constant presence of numbers and other very ill people only served to desensitise me to the reality of eating disorders. But I did not leave behind all the people I met there: I was and am still friends with many of them on Facebook, and some read my blog too. I also have very close “real life” friends who are or have been very ill at various point during my recovery. Personally I don’t tend to be triggered by people at low weights – maybe in part because my anorexia did not involve body dysmorphia – but I have still found it difficult to cope when close friends have been in bad states, because it’s quite frankly terrifying to see someone you love killing themselves right in front of your eyes. It actually produced a PTSD-like reaction in me sometimes too, because it gave me distressing flashbacks of my own experiences. It made me see my eating disorder in a whole new light. This was a good thing, for the most part, because it made me really hate what the illness was doing to my friends – but it was also hugely stressful at times, and stress is a big trigger for relapses.
So I had to think carefully about my friends, as guilty and selfish as that made me feel. I remained good friends with a couple who were extremely unwell, and put a lot of effort into trying to keep myself safe and be supportive and non-judgemental. I think the operative word there is “trying”! No one is perfect – I know I’ve said things out of frustration sometimes that I really regretted later on, but I always tried to apologise and explain that I had just been scared and opened my mouth before I’d engaged my brain. With friends who were still eating disordered but with whom I was not very close, I just made sure I wasn’t getting overly involved and tried to be friendly and supportive.
On the other hand, I also had to cut off contact with a few people who were constantly glamorising their eating disorders and saying triggering things – even though I am not easily triggered and try to take responsibility for my reactions if I am, I have a limit. Sometimes this was as simple as just not reading certain blogs any more, whereas with closer friends I tried to explain in a non-critical way that I didn’t think the friendship was healthy for either of us at that point. And I think this is the point – if you feel anxious, triggered or upset by a friend to the degree at which it threatens your own health, you will not be capable of being a good friend to them and THEY will probably be feeling guilty about their effect on you. It is sometimes better for all concerned if you try and distance yourself from people you really struggle to cope with, as hard as that is.
Another related point is that many people find that their personality changes dramatically in recovery, and this can also affect relationships. I became more confident and assertive, more vocal about my opinions and willing to argue for them, more outgoing and friendly, less reserved. I began taking an interest in current affairs (much to the amusement of my boyfriend when the UK general elections were being held in May 2010), and found that my own views differed wildly to those of many of my family and friends. My family seemed to cope quite well with me suddenly becoming more open and opinionated – I think they were just relieved that I didn’t look like I was about to die any more, even if I had turned into a bleeding-heart liberal in the process – but I know this change has come as a shock to the families and friends of some of my friends in recovery. More than one person I know of had to cut themselves off from old school friends because they realised the approval of those people was dependent on them continuing to play a withdrawn and eager-to-please role in the group. Again, this is no easy and quick way through this process – it happens, and you try to deal with the fall out as you go along.
I hope I’ve given you an idea of what my life is like now the ED is no longer present in it, and how I built things up slowly. Slowly was the way to go for me – I have spent too many years trying to throw myself into life as soon as I am minimally healthy and stable, and it always went wrong. As frustrating as it was, taking things slowly has really paid off – and when I think about it, rebuilding my life to this extent in just two years does not really sound all that slow at all.
What to do with all that baggage?
People who recover from an eating disorder (or any mental health problem, really) seem to fall into one of two camps in regards to their past experiences. Either they want to leave it all behind completely, or they want to do something positive with it, such as training to be a dietician or therapist. There are pros and cons to both of these options, and whether either are healthy depends entirely on how the individual approaches them.
I think a lot of people in recovery can relate to the desire to cut ties with the past, put it all behind them and make a fresh start. For some people this just means having no external reminders of their illness in their life – pursuing an unrelated career, throwing themselves into things that “normal” people their age do, and exploring all the parts of their personality which were squashed by the eating disorder. This can definitely be done in a healthy way and are all really good goals. The problem comes if someone is determined to disown their experience completely: refusing to ever discuss it again with people who know, trying to hide it from everyone new in their life however close they become to them, and even attempting to stop themselves from ever thinking about their continuing needs in recovery. This doesn’t really work, because if you were ill for a significant period of time you are effectively cutting out a big part of what made you the person you are today. You might find that you feel misunderstood by people around you who don’t know, or that you are too scared to tell anyone if you start struggling again for fear of ruining the new, “untainted” image of you that the people in your new life have. Sometimes I feel like I need to hide my history of mental health problems because I’m worried about being judged, but people are often more accepting than I fear they will be. I also tend to believe that the more people talk about mental health problems openly, the less stigma around them there will be. If you have no one in your life to talk to about readjusting to life after a serious illness, there are options like university/workplace counselling services and mental health charities if you run into problems.
There’s clearly nothing wrong with moving on and taking your life in a different direction – just be careful that you still have people to talk to if you need to and that you’re not trying to pretend to be someone you’re not. You also need to remain vigilant against relapse, especially in the first few years of recovery. It’s a depressing thought, because people often just want to gain weight and then be DONE with recovery – but in reality it really doesn’t take up much time or head space to keep an up-to-date relapse prevention plan, check in with it once a month, or talk to people who know about your history occasionally to make sure that they haven’t spotted warning signs that you haven’t noticed yet. Some people don’t want to accept the potential for relapse because they feel like that means full recovery isn’t possible, or because they don’t feel like recovery is worth it if there is a chance that they could slip backwards later on. I think these are totally normal fears that have been exaggerated by the ED. I personally believe that I have a biological predisposition towards eating disorders, and that I will be vulnerable towards relapse at any time in my life when I am not able to eat properly due to illness or stress. That does not mean that I WILL relapse, just that I have to be a little more careful to look after myself during those times than other people. Eating disorders do not have to be a life sentence, and being aware of the potential for relapse does NOT have to mean that the ED will always be present in your day to day life.
Then we get to the other group of people, who want to make something positive out of their experience. Sometimes people make the assumption that those who go into ED-related professional fields are still obsessed with the illness and haven’t let go of it themselves. I think this is something to be mindful of because you can’t help anyone else effectively if you are not healthy yourself, and it is true that a lot of people who are still unwell feel drawn to careers involving food – it’s part of the obsessive nature of the illness. However, it is also possible to use your experience positively and healthily, without hanging on to your own eating disorder. Behaviourally, physically and mentally I have no ties to my eating disorder – but I am training as a counsellor and I volunteer for an ED charity, in the dual roles of trustee and speaker at local schools/universities. I didn’t actually plan on doing either of these things after recovery, they just sort of snuck up on me after I was weight restored and thinking about which direction I wanted to take my life in.
There are a couple of reasons why I do what I do. As I said in this post, after being ill for over a decade I have picked up a lot of knowledge and understanding of mental health issues. It is something that sets me apart from other people, something I’m good at, and something which makes me potentially valuable to society after being unemployed for so long. I am confident when I speak that I know what I’m talking about, I am passionate about the subject because I know so many people who have had their lives ruined by eating disorders, and I feel very motivated to help people. It seems a waste not to do anything with all of that knowledge, and I want to make something positive out of all those rather hellish years.
The other big reason is that I’ve lost friends to eating disorders and suicide, and their deaths have felt so unnecessary and unfair. I believe that the lack of understanding around eating disorders is one reason that so many people die. It’s not like I go into my talks in schools thinking that all the eating disordered people in the room will see the light and instantly recover – but I DO think that getting accurate information to carers, friends and other people who support those with EDs can make a big difference in terms of early intervention and/or adequate support during recovery. During recovery people can be very vulnerable and easily overwhelmed, and having a good network of understanding people around them can be such a help.
I would add that I don’t think anyone should go into a professional role in the field of ED treatment unless they feel very strong in their recovery and are no longer susceptible to disordered thoughts or behaviours. I feel like my recovery is as strong as it could be at this stage – I occasionally find myself having ED-related thoughts when I am under a lot of stress, but I don’t act on them and on a day to day basis my ED is no longer present in my life. When I qualify as a counsellor in two and a half years time I will hopefully be even more resilient.
I am also open about my history in my day to day life. Not straight away – I don’t go around blabbing my entire life story to everyone I meet! But if I get to know someone quite well I do tell them about my ED and other mental health problems. This is mostly because it’s impossible for anyone to get to know me without knowing at least some of the story. My life was completely dictated by my mental health for over a decade, I dropped out of my education multiple times and have been left with permanent scars and digestive problems. If I tried to hide that from everyone I met our conversation would have to stay on completely superficial topics, without me giving away any information about myself. Even simple questions like if/where I work and what I did at university can’t be answered without some reference to “a chronic illness” which left me unable to function for a few years. I can and do leave it at that with some people, but if it’s someone I want to be friends with I will go into a bit more detail or maybe give them the address to my blog. That doesn’t mean that my friendships NOW centre around mental health issues, because there is a lot more to me and my history than that, but I don’t cut them out of my life story completely.