Telling friends about my Eating Disorder

Due to my anorexia nervosa I have lost a number of friends. Some directly due to my illness, some perhaps because, as the illness became all too consuming, I spent less time contacting them coupled with the fact that one of my friends moved school and went on to lead a seperate life to me.

I had three friends at school, and one who had just moved. Telling people about my eating disorder has sometimes worked, but sometimes has miserably failed.

One of my friends kept hinting to me that I had anorexia: she talked about famine and kept offering me food or asking why I was failing to eat at lunch or constantly at the doctors. I decided to write to her as I couldn’t tell her straight to her face. In her response, she replied:

The main reason was that whenever I talk to you I always got worried because of all these days you have been having off. And I got the impression that you didn’t want to tell me, which was fine initially but the more appointments you started having the more worried I got and didn’t know what to talk about with you which wasn’t related to your doctor’s appointments. So I’m extremely sorry.

[…]

I’m here for you. Whenever you need help with anything, just ask. I will not mind, infact I’ll be glad to be help in any way.

[…]

Since when do you have this problem?

I didn’t particularly like the questioning: does it really matter how long? Needless to say, despite her positive response, she never really understood and soon decided to leave me. After prolonged absence from school, she avoided meeting with me to go out to the cinema. She was jealous of the exam support I received and the grades I was achieving despite hardly ever being in class. She spread messages about me in the common room, and refused to even work as part of a group with me in Biology (and left me on my own; it was humiliating but luckily some other girls helped me out and let me join their team). She failed to pass on important messages to me when I asked to look at work I had missed. You would think such exclusion and bulling would stop in Sixth Form, with people being 17-18 years old, but things have changed little since I joined that school.

Another friend left me as her mum thought eating disorder are contagious and she might contract it from me. The third friend just…left.
However, yesterday I talked to a very close friend. She used to tell me I need to gain weight, but didn’t ask and respected me that I would tell her if and when I felt was right. She told me today and my ex-friend asked her (“hey, Kushika’s lost a lot of weight.” “I know.” my friend replied. “why?” — basically my ex-friend wanted a bit of gossip instead of asking me directly). My close friend asked why I was extending my studied by a year. So I told her I had anorexia, gave an idea of what symptoms I lived with, and told her I was doing okay now. I explained to her that it was nothing to do with the media, and dispelled a few myths. She understood to a certain extent as her ex-boyfriend has anorexia for a number of years and is underweight to this day.

So, in conclusion, I’ve had mixed responses. I don’t expect people to understand, and don’t need friends to understand the illness, but I expect people not to judge me or cut me off because of my illness. The friends I have lost are not the people who I wanted in my life. When explaining that I was ill, I only do so if I am comfortable, and if I don’t feel its necessary, I see no reason why someone, even a friend, needs to know of my health unless it will be beneficial to me. I always try to dispel myths if I do, and explain in what way I want people to support me seeing as very few people know what they can do to help (it could be as not mentioning diets excessively or commenting on appearance or just being there).

Reaching Out: Support Groups

I am starting a new series in this blog entitled reaching out. Overcoming an eating disorder is hard but it may be impossible to do without any outside support. In fact, it is very important to work on building a support network in order to recovery and to maintain one to prevent relapse.

I found it very difficult to reach out to get support. I felt weak to ask for help and had a misconception of what treatment entailed. I felt I would be a burden if I asked for help, and deeply ashamed for not being able to do this on my own. However, I have learnt that I cannot walk this Earth alone; it is not a sign of weakness to ask for help but an act of courage and self-care.

I’ve only managed to get to three recoverers’ meetings so far, but the support I have found in the self-help groups has proved to be invaluable to me, although I understand that people can have a variety of feelings towards such groups since it depends so much on who attends and how they are ran by the facilitators.

In the UK there are a number of support groups, which can be found using BEAT’s Helpfinder. I found my local support group there.I’ve heard that in the USA there is Eating Disorder’s Anonymous, although I’ve heard that they focus more on a 12-steps approach to recovering from an ED as opposed to just being there for talking about random topics. I know that one blogger, malpaz, is attending the USA EDA support group, so it may be worth directing questions to her, or taking a look to see what she is blogging about as both types of groups seem to have a different ethos.

I attend monthly sessions. I was terrified at first: what if I was the fattest one there? Will I be triggered by other members? What if I’m at a further stage of recovery than the others are? What is no one but me turns up?I had not ever talked openly about my anorexia, and the child services, CAMHS, told me that the competitive nature of EDs prevented group therapy from taking place.

It turned out there were some women who were thinner than me (as they talked of symptoms of being underweight when I was free of those symptoms). There were some who had lived with the illness for much longer than me. Some had been in in-patient for years.But I did not personally feel competitive. I thought to myself: the ‘best’ anorexics are the one’s who die. I thought, she is really suffering and I know what that is like too, so how can I be jealous of someone else’s pure agony and the torment they are living through?

There were the “no number” rules, and other ground rules to keep the conversation on-topic and recovery orientated which was fantastic and meant the environment was very productive and not detrimental to our recovery. There was one occasion where a member broke the rules, and was not rectified immediately, but after e-mailing another facilitator we were reminded of the rules more often and the situation did not reoccur.

At the first, I was not too positive in my attitude. But I met a girl who was living life and working and who was very cheerful and proud of where she had got to. I think her charisma really caught on and taught me that I too can feel proud of where I am and that the world does not need to be covered in black paint.Now, I go to the support groups with an open mind, and try to be positive in what I have achieved.

The second meeting I met another woman, who came again in my third session. It really helped to listen how she copes with some of the stresses of eating. I spoke about the challenges that I am about to face in the next few weeks. She gave me ideas on what I can do to cope and what helps her, and I also had a chance to tell her my plan of action to cope, which cemented in my mind what I can do to help myself. It was really nice to see her come as she was a familiar face — and less awkward to start our conversation too!  It turns out that we have some things and thoughts in common, but also some major differences too (in our lives and families, mostly).

I was also able to talk about my experiences of self-harm, and it was inspiring that there were people out there who were further recovered than I was in that respect.

To be able to talk to someone, and feel understood, feels wonderful. I feel less along, and able to cope and able to ask do you have any ways of coping with xyz?

From those meeting I have a fuller “coping toolbox” and plan to add the following to it:

  • Keeping up with writing a journal of my struggles (I also talked to some of the recoverer’s about how it’s best to keep a journal, and that I am able to take it out where I go too for safety)
  • Trying “distraction” activities after eating a difficult meal (the woman did cross-stitching but I might try drawing in my sketchbook)

I shall look forward to the next meeting. It’s a shame so few people turn up to the meetings, but I’ve yet to be the only one to turn up. I hope to see some familiar faces next time too.

For those of you contemplating going to such support groups, I would encourage your to try finding out more information first, and then to consider giving it a chance. I won’t deny that some have not had good experiences, but you can never tell how things will go if you don’t attend. It might be a great opportunity to reach out and get some extra help. It’s also reassuring to know that, unlike on the support in the NHS, there are no “entry” criteria. It’s not a substitute for professional advise, but anything that can supplement my recovery is worth investing (even if it means travelling out of town by rail and then bus).

Improving mood by HEALTHY exercise

I wrote a post not so long ago about returning to exercise (sensibly).

Today, was a sweltering hot day. I got up in a particularly nasty mood which was lingering since yesterday. Nasty thoughts raced through my mind:

I take more from this world than I give back

The world is against me; no one wants to be friends with me

What if…what if I have failed me exams? Them why have I bothered to recover?

The stress of my exams, coupled with the fact that they are now almost over and I have no friends to go out with (causing me to get depressed as the brick wall hits me in the face that leads to the inspection of myself in order to find what defect I have that prevents me forming more social contacts).

Normally I would look at challenging those thoughts as I have learnt to do in therapy. But sometimes I am caught off guard and just cannot think of any challenges. The answer, I have found, is to think in advanced (when I’m in a better mood) of negative thoughts that may occur, and write challenges to those thoughts. Then, to simply look at that piece of paper when those thoughts occur.

I shall post challenges to some of these thoughts in another post.

Anyhow, on with today’s story. So, I am in a  really negative state, and decide to look up the swimming pool timetable. I get my swim gear ready, decide to go with my granddad (who I see infrequently), pick up the courage to challenge myself (will people look at me and my body and analyse it as much as I do?) and simply go. It’s a sweltering hot day and I can’t wait to get into the water of the indoor pool.

I ensured that I did not overexercise by the following:

  1. I made sure the exercise was not intense. There were no self-imposed goals or targets to meet.
  2. I made sure to take care of my body, which is still recovering from my shoulder operation, and my general lack of fitness by taking regular breaks. I listened to my body: if it told me to stop, I stopped.
  3. I talked to my granddad, so added a bit of socialisation; the focus was shifted from calories to having fun.

I came out after 2.5 hours, and was amazed that my mood had lifted. It’s honestly like a miracle, a magic, quick-fix “pill”. Perfect. Research shows that exercise releases endorphins in the brain, and I certainly noticed the positive effect. The negative thoughts have died down.

I plan to incorporate gently exercise into my routine. A pleasant swim once a week might make all the difference.

One thing is still missing: eating a tiny bit more to compensate. I just don’t feel hungry. I am arguing with myself now: should I or shouldn’t I? Part of me feels I did not burn that much (I swam far less than I hope to or used to pre-anorexia). That I can just ignore it and move on. It’s just a one off, right? But the logical part of me knows that if I slip back, it will be all the easier for unhealthy exercise to creep back in when I am least expecting it. On second thought, I might grab a something, even if it’s just an apple to make up for it (well, I ought to be eating it anyway considering that I’ve been eating less over the past few days, although I ought to eat something more substantial). It’s not worth slipping back. I need to hold myself accountable. If I want to exercise, I need to ensure to do it healthily.

Relaxation

The body’s natural relaxation response is a powerful antidote to stress. Relaxation techniques such as deep breathing, visualization, progressive muscle relaxation, meditation, and yoga can help you activate this relaxation response. When practiced regularly, these activities lead to a reduction in your everyday stress levels and a boost in your feelings of joy and serenity. What’s more, they also serve a protective quality by teaching you how to stay calm and collected in the face of life’s curveballs.

Take a look at this article located at: http://www.helpguide.org/mental/stress_relief_meditation_yoga_relaxation.htm

In addition to this, I another useful resource if the free section of the iTunes store, useful for those of you with iPods. Simply search “relaxation” and there are a number of free files to download which may help you. I particularly liked one titles Relaxation (Garden) but I know this is a personal choice so you may want to try and download a number of free ones.

In addition, there are some audio relaxation exercises available for free download from the Eating Disorder Association of Ireland

Getting back to exercise

I’m at a weight were I can exercise again after my exercise was previously restricted. Fantastic!

But with the decision to start exercising comes responsibility for my actions as I used to over-exercise, waking up before 6am to fuel my compulsion to burn calories, and also a variety of choices to make.

Physical implications of Anorexia have prevented me doing my favourite sport: swimming

I had a physiotherapy appointment not too long ago and have got the all clear to start to exercise again.

To give you a bit of background information I have suffered from an unstable shoulder and recurrent dislocations, the first being caused 2 years ago during a skiing accident. Since then, I began to diet, developed anorexia and become malnourished which compounded the problem, and I started to dislocate it all the more frequently. This has led to a restriction to the type of exercises I could do, and impacted my life greatly. It was a great source of almost unbearable pain which got progressively worse, and which had a huge impact on my life.

To count to date I have dislocated numerous times;

  1. skiing accident mentioned earlier
  2. when moving a box (needed to go to A&E)
  3. when engaging in compulsive exercise by going swimming (A&E trip again)
  4. when tripping down the stairs at a train station (relocated itself)
  5. when falling into water from an inflatable ring pulled behind a speedboat (A&E — an air ambulance even got called out which made me feel special [for the wrong reasons])
  6. when I fell onto my shoulder when my bed collapsed (A&E)

Most of those dislocations are a blur of memories that I barely recall — the sound of paramedics, the tingly feeling in my libs whilst being on laughing gas, the confusion and delirium when waking up from a bolus of IV ketamine, the pain and the comfort of friends and family, the sterile smell of a hospital setting, the morphine-induced hallucinations — and finally, the last incident when I had to be anaesthetised, was the final time I dislocated my shoulder.

Since then, I have had a shoulder operation (anterior shoulder stabilisation) to fix the tear in my ligaments (as I now have three pins in my shoulder). And so, as the rehabilitation carries on, slowly but surely, my body is recovering from the physical impact of my eating disorder.

Would things be different if I hadn’t starved my muscles away? Could I have prevented it? I don’t know. Perhaps the physio would have worked better in the earlier stages if my muscles were stronger. Perhaps I just had a physical weakness in my shoulder and my illness simply exacerbated it.

But now, I have the choice, as my physio says, to get back to swimming. This brings on challenges in the following ways:

  1. How do I ensure I exercise gently and not over-exercise once again?
  2. Where is the line drawn between “excessive” and “normal”

Exercising for the right reasons

I need to ask myself the following questions with regards to exercising again:

  1. Why do I want to exercise again? Do I secretly hope to lose weight? Or it is because I enjoy the activity?
  2. Am I capable of increasing my food intake and responding to hunger signals in order to compensate for the calories burned?
  3. If I do lose weight for not compensating enough, am I willing to gain it back?
  4. Am I prepared for the dial on the scale to increase if I turn more of my body mass into muscle?

I have yet to answer these; some of the questions can only be answered after I try it.

Exercising is a challenge for me: it brings back memories of  weight loss, of the obsession of doing x lengths in the pool, of my eating disorder.

I need to be responsible for my actions, and deal with any consequences involved. I need to exercise for the right reasons only, and not exercise because it fuels my anorexia.

Exercising alone vs exercising with others

I was recommended to join a team sport by my treatment at CAMHS. I was advised solitary activities would be dangerous territory. But alas, my shoulder prevents me from doing sports like netball, and so do financial constraints. I cannot find many who are willing to exercise with me either.

Therefore, in a way, by doing something like swimming I feel I need to be all the more cautious as it was, technically, against the advise of my old treatment team. They may have made a fair point: it is hard to judge what “excessive” is when you have suffered from an ED, and other “normal” individuals can add a sense of perspective.

I shall let you know how my journey to incorporate exercise into my routine works out. I might not be ready yet, but we shall see how I will turn out to deal with this.

What helps?

I was reading a blog post from someone I follow, and the author, Melissa, asked a very difficult but intriguing question in on of her most recent posts.

[…] I emphasised the individuality and variation inherent in eating disorders; and the impossibility, therefore, of a one-size-fits-all approach.

[…]

What are the things – in terms of types of treatment, and approaches, and qualities – that really helped?

I thought I would therefore share my response too:

More

Challenging Assumptions

One important thing which I have learned is to challenge assumptions. A lot of assumptions consume my life, which make m mind spiral out of control as it decsends into the abyss of depressive mood and darkness. Yes, thinking postively can indeed change your mood.

Unfortunately, I sometimes do nt do this autmaically — it is a skill that I have learned in CBT therapy and one which I need to pull upon if I am to ever buld m self-esteem and get past me Eaing Disorder.

This requries two things:

  1. To recognise a thought is an assumption
  2. To challenge the assumption accordingly

Let’s take a look at an example which happened to me a few days ago. It was my friend’s birthday, Jessica’s, last Saturday. I dropped her a text asking when it wold be best to give her the lovely gift I had brought.

I’m working on Saturday, but my mum is in if you want to drop it off there

I turned up at her workplace to find that she was not there.

Immediate thought:

She lied to me. Maybe she doesn’t want to be friend’s with me. What on earth is wrong with me? On Facebook she is going out with someone else and not me…

It turns out my negative automatic thought was wrong. She was working at her aunty instead (her othe workplace). She was overjoyed to see me, and said she wanted to go out with just me becuase she wanted to do something special.

So, next time I need to challenge myself just that litle bit more.

Things are not as they always seem.

On a tightrope: emerging into the real world

I was corresponding with another recoverer, and thought I would share with you my current struggles with learning to accept my life in recovery:

My life now is so much better without being so terribly ill, but in a was I find it difficult to re-emerge into the real life. My old life used to consist of travelling an hour to my OP treatment, seeing someone one or twice a week for an hour, getting home which took a hour. Then there were weekly blood tests at my GP. On top of that I developed an unstable shoulder due to muscle wasting (possible due to my anorexia?) which landed me on gas then morphine and then emergency anaesthesia at my local A&E a number of times. On top of bone scans, and other tests, and once a hospitalisation for medical instability. It blocked out every single worry I had, and every anxiety too as I was not living in the real world. I partly enjoyed the “life and death drama” of it all. Which is sad, I know. I lost friends, I disrupted my education, I isolated myself etc. And now it just feels so surreal that I am living “in the real world” and trying to be as normal as I can be. It just feels so odd that I have been so disconnected from the world for what seems like an eternity. Right now I feel I’m on a tightrope: I’m occasionally fantasising about the old (I know, very crappy and pathetic) life, and also about the life I could be living if I was even more free; I’m swaying between the two, but somehow managing to stay in equilibrium of being neither sick nor well.

Positive Qualities

This was an exercise I did in order to improve my self-esteem by writing a list of positive qualities. And, not only that, to back them up with evidence. Every so often I can add to the list. The important thing is to back it up with evidence, so that there is less chance of discrediting them.

  • I have a variety of achievements, awards and certificates which demonstrate my academic abilities. I am intelligent.
  • I take good care of my dog. I am caring.
  • I help injured wildlife and have helped to save the lives of 2 birds and hedgehog. I am compassionate.
  • I am punctual and reliable.
  • As a friend I am always loyal and caring and would never hurt other friends as others have done to me. I am trustworthy.
  • I can ski, snowboard, swim and do other sports. I have skills.
  • I am good at art and many people like seeing my work; I’ve had an exhibition at the Cornerstone Art Centre and have had a radio interview on the subject of art in Poland a few years ago. I am artistically talented.
  • I am very detailed in my work which always reflects a high level of accuracy. My teacher described me as “precise and creative” .
  • I learnt to web design at the age of 10, and currently run many (moderately successful and small) online communities / sites. I have skills and the ability to teach myself.
  • I always try to be polite to others and helpful where I can.

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