This song showed up on at the top of my utube selection. Does utube read my mind or my blog or does it just select similar tunes to those I am listening to in respect of struggle and fighting and courage and finding “more”. It certainly resonated when I thought about my life’s experiences and especially right now in dealing with such a complicated situation.
Anorexia. A horrific illness that doesn’t sit alongside those other heavyweight physical illnesses where the courage required in fighting it is so very visible and acknowledged. This one often feeling a lot like AIDS during a time of ignorance. Anorexia and other eating disorders sitting in the shadows, in that category of “shameful” as though it is something you brought on yourself. She often says that to me. She didn’t bring it on herself.
I reminds me as I write, that watching Philadelphia was when I fell in love with Tom Hanks as an actor as he played Andrew Beckett. I remember going to the cinema on my own to see it. It felt so inspiring in watching someone’s fight for what is right and just. One of my favourite movies actually. If you’ve never seen it I would recommend it. Hanks and Washington are fantastic.
I loved Lady Di because she made what wasn’t seen, seen. She brought people out of the shadows and to a place where they were seen and felt accepted. The most famous woman in the world who felt so alone in her “gilded cage”. Why do the best ones always seem to die early? I loved that she was so beautiful and kind when I was a kid but I find her more inspiring in what sat inside her, the older I get. She was something else.
When I think of all the “experts” I have met in this journey I find myself thinking how the people who make the most difference are the ones who actually “get it” or at least really try to. The ones who are just kind and caring. The condescending dietician irritating me the other day as she told me how I was feeling. I wasn’t. I see why she is such a big trigger for my daughter. I felt it in all her hiding behind her job title and pieces of paper but having absolutely no people skills. She knows far more about nutrition than I do but if you can’t see or hear a person beyond the illness then it just alienates.
What my daughter actually needs right now is someone beyond, that understands her. That just “gets her”. That can help her push through this wall that she is pushing at but needs a little more weight behind it to really shatter it. I’d love to think that I’m enough, but I know I’m not. I know my limitations in being the mum, as hard as I’m trying. and I’m throwing everything of myself at it. I can drive us forward and take the hits, and listen to her and know her and use all the approaches I know that work and help. But she needs more. Someone who isn’t so close to it all. An external person, a confidante, a person who is in it with her and believes in her too and who can help to push at that wall with her. Someone she trusts. I am pushing at it with her but this illness is so powerful that it needs more than a mum. I can’t play therapist to her in the purest sense of the word. There is a conflict of interest and therefore having someone that trusts and understands her and listens is what she is desperately in need of.
All the expertise in the world falls flat if it is not delivered without any real understanding of her, her life, her world and what makes her tick. She can’t relate to a lot of the types she sees. She sees them as people doing their job and then going back to their flash houses. Who don’t sound like her. Who talk to her in a way that reflects their world, not hers. She’s ill but she’s not stupid. She sees how the real world works. She’s seen so much real so keeping it real is a must. Having someone who can relate to her world feels so important.
Needing a Miss ON who was the only teacher at school who really saw the easy and quiet girl at school and saw her potential. She pushed her but in a way that showed she really cared and understood her. Getting to know the “under the radar” kid and taking interest in finding out who she actually was.
We’ve all had one of those haven’t we? Mr D my Humanities teacher at school being mine. He caught my young 11 year old feistiness hidden behind the quiet exterior and challenged me to show my mind. He was my “go to” all the way through school when other teachers pissed me off in their control and command techniques or belittling or condescending ways. It’s all in just “getting it”. Mr D was a master of getting the best out of me because he treated me like an equal and he didn’t talk down to me. I could argue with him and he would say “then show me what you can do M”. And I did. I know he found me exasperating in moments but he also told me how proud he was of me and gave me so much confidence.
With my daughter I am needed as a mum. A mum who is holding it all together and makes it feel safe and secure in dealing with all the practicalities. Seeing me fixing stuff again that had all fallen apart. Getting the bathroom sorted sounds small but feels massive in turning her home back into the home she remembers before it all fell apart and was left in ruins. Putting those foundations back in place in what is familiar. I can’t play every role even if I try. They conflict and there just isn’t time to be everything that’s required. Even though all my time is spent in this. Completely dedicated to her recovery because she bloody deserves better.
On days like the weekend when my daughter was feeling the stress and anxiety of something that was important to her and her frustration in this illness, she didn’t know how to let it out. i saw it coming towards her safe place and felt it in every kick and punch and bite. Finding myself having to hold it together as I try to safely restrain her, place her in her room without hurting her and close her door while she calms herself. And then sitting outside breathless, shaking and trying not to cry. This illness creates such strong feelings. It takes those moments of high anxiety to push her backwards. Helping her to eat after always feels like a mini victory. But the more she eats, the more she loses that comfort and coping strategy, and the more anxious she becomes. Help to find better strategies is what is actually required. To find new replacements for coping. She is trying in finding her own. Meditation classes helping. But the reality of this illness is that it takes time to be able to manage without it. to be able to relearn to cope in a different way. in a way she did before this illness took control. We find our way through those moments but I find myself so frustrated in how little she is being helped beyond. This is a mental health illness which requires therapy. She is at the top of the list but they have no therapists. We tried to go down the private route but she refused because of how much it cost. Knowing that I’m not earning because I’m caring for her and worrying about the money. Worrying because she has seen me worrying when I tried to keep hold of our home. It doesn’t matter how many times I tell her that her health is more important and not to think about it . She does. That’s how she feels. None of it helped either by seeing the effect on me in my experience with trainee counsellors and not having much trust in seeing how much that experience hurt me. Her once happy dreamy and easy going mum reduced to feeling worthless herself. I know how my experiences play in to hers. Doesn’t make me feel good and leave me wishing I could have hid it all more. But amongst all the difficulties and the moments of aggression she continues to make progress both physically and mentally. Having a semblance of a life around the illness crucial to that. Those really difficult moments feel a small price to pay in the bigger picture even though I know we need more help in order for her to deal with it. She was going to be sectioned and yet we can’t get specialist therapy in her not being in hospital. How can any of that be right. While meanwhile lots of money is being continually wasted on NHS middle managers of bureaucracy. What do any of them do? Can you feel my frustration? Less overwhelmed and more fighting for what she needs.
Her efforts in trying to take back control from this illness takes absolute super strength. Strength she is showing even in all her exhaustion. In those moments when she fights with it in ways that I can’t describe or a way that doesnt do it any justice, I see the conflict all over her face. A visible pain that cuts me to the core. Trying to overcome it and push through that brick wall that she can’t push through right now is so painful to see but not nearly as painful as it is for her to feel. A battle that I saw a few days back in its most basic and raw form in pushing for that one extra piece of chicken goujon. Putting a piece in her mouth, chewing it before spitting it back out and screaming out in her sheer frustration in not being able to swallow it. But then finding something more, as she sat curled up on the floor and tried fighting back one more time to the point of opening her mouth and pointing to it as she closed her eyes. Unable to place that piece of chicken in there and silently asking me to do it for her. So she could just chew and swallow. I felt her relief in achieving her aim. A relief that felt impalpable. The proudness I felt in her in just that one moment in seeing her strength and fight. What a Spectacularly Courageous Woman she is. Something that someone else wouldn’t even have to give a second thought to but for her feels so painful and difficult and requires her to constantly fight.
This illness creates hell for a person. It ruins livesIt destroys every part of a person and their life. And reclaiming it is a fight that happens in every moment of every day. Medicine that has to be administered all day long and feeling the effects of it in both the before and after. The anxiety in the build up to each meal and the guilt that comes after which is constant. A never ending cycle of pain which is eased by distraction. And extra motivation found in little carrots of nice things than seeing the bigger carrot of reclaiming her and her life. Before I was up close and personal with this illness I didn’t understand it. Did not have a clue. I didn’t realise the kind of damage it inflicts on a person. But the people who deal with it every day do. They know that it destroys lives. Although often I encounter “experts” that don’t. Not in a real sense. They understand the theory of it and it’s effects but not the reality of what it actually looks and feels like every day. How it affects each individual in different ways. As they talk about it very genetically as though the same approach will work for everyone. Ask any carer dealing with this. There are similarities and things that need to be done that are the same. But how they are experienced and felt by the person suffering often looks very different and also what they respond to. It’s a mental health illness and therefore one size doesn’t fit all. But in this massively and shockingly underfunded hidden illness the things required just aren’t there. So stumbling through it by yourself is how it works. And people trying to tell her how she feels is not helpful. As they constantly quote “it’s the illness”. “I am still a person” she often says to me. “I know you are” I reply as I think how glad I am that we kept her out of hospital. I’ve read a lot about how the mental health of patients in that environment plummeted. Dehumanised while being re-fed. You can’t tackle one without the other. And yet a hobbling NHS System is all geared up to weight gain till they get to a place where they can be discharged in favour of someone in more critical condition.
It is a deadly mental health illness, it reduces a persons life expectancy if full recovery is not made, it has severe physical implications and crushes who they are as a person reducing them to a shadow of their former selves, taking away all the things of life that we all take for granted. That very basic version of survival in food that for some provides their greatest pleasure, is her greatest pain. All the things that she once enjoyed in pizza nights, or a chocolate brownie or an ice cream at the seaside taken away, as food becomes medicine that has to be administered every two hours and not able to enjoy any part of that. Those chocolate brownies that she loved so much but now can’t touch. Replaced by more supplement drinks that provide the extra calories required. It is just something she has to do in order to stay alive. At this extreme stage it requires more. Weight gain not enough. Without the therapy she is just going round and round and getting more and more tired and frustrated. I feel it to. While the life she once had and enjoyed now feels like a distant memory of when she used to really laugh. A joyless existence where things aren’t experienced in the way they once were. Sadness, pain and anxiety and stress reigning supreme over a once giggly girl with sparkle in her eyes.
And yet her kindness and compassion for others always still evident even amongst her pain. I often find it inspiring in how caring she still is of others when she is going through so much that is hidden away out of sight. As she asked if we could take flowers round to her friend whose dog died. As she disguises her own pain in those moments. Others not knowing what hell she is going through. Oblivious. If they did perhaps they would be more understanding in moments when she can’t go to something or is late or leaves early. But she can’t tell them because she feels so ashamed. As they make jokes about her being boring when she doesn’t go to things. Those jokes that come from not knowing but hurt her even more and leave her feeling even more alone. We never know what others are going through. Just because it isn’t shared doesn’t mean it doesn’t exist. Just because it is shared doesn’t mean it doesn’t hurt. But seeing her kindness towards anyone tells me so much about who she is underneath. She being unable to share because she feels the shame of an illness that is hidden out of sight and feels so unimportant. Because others might judge and treat her differently without any real understanding about it. There is no shame in this illness or how she feels. And despite its absolutely devastating effects it doesn’t receive the proper funding required to help these mainly young people deal with something that ruins their lives. It feels shocking that something so serious is treated so insignificantly. An illness that can eventually either kill through a slow and painful death or has a high rate of suicide in feeling so completely alone in it. If I thought we had to fight hard for P’s mum and dad with their cancer then I am seeing with this illness, that we are constantly just hitting our heads against brick walls. And the truth is the psych knows it.The one person I really trust in any of it who really cares and is doing her best in an underfunded and hidden service. Because frankly no one really gives a shit about this illness. And that’s the truth. And until it’s profile is raised in a way that doesn’t feel shameful and embarrassing to those suffering with it, it will remain in the shadows. That Queen of hearts Lady Di also having an eating disorder. Did she bring that on herself? Or did events of life and the world she inhabited kick the shit out of her in all her sensitivity.
My daughter told me about the boy who repeatedly called her a bin bag. “Avoid her, she is a piece of rubbish” he was quoted as saying. As then her skin flared up , which then made her feel ugly and lose her confidence and self esteem. His voice repeating in her head in being a piece of rubbish. Stupid little boy not giving a shit about his impact on her as a young woman and all the difficulties that already come with that. Trying to feel good about yourself in this worlds obsession with beauty. All that women empowering talk of inner beauty often just feels like exactly that. Just a lot of talk. The world hasn’t moved on that much. In the real world beyond all that politically correct chat, women are still judged on how they look. To pretend that it is any different is to live in a fantasy. Ask any teenage girl or young woman who feel the pressure to look good. And boys getting the same treatment more and more. Something that Stanley Tucci said as we watched the Devil wears Prada as he talked of the billion dollar industries that aren’t about inner beauty. It appears, since the pandemic, that a new billion dollar industry is being created for the other. In the end they all end up being driven by the same thing. This illness being no different with private clinics servicing those who can throw money at it while in the average persons world they are left with an NHS system that can’t cope. Without the resources to deal with the complexity of this illness.
When it comes down to it the truth is that our kids feel more and more pressure In everything. Trying to fit in a world that often feels very superficial. Where can your perfect smile take you? I read as we picked up her new retainers. The lady behind the counter at the dentist always commenting on my wonky tooth telling me I too could have a beautiful smile if I had braces. I think just seeing my daughter well again would provide that. I always ignore her. I’ve had this wonky tooth my whole life. Didn’t stop me getting anywhere. Might be a different story now in the world of perfection. Thank god I grew up when I did. At least the page three birds back then felt a little more real to me and a little more honest in how this world really is. Well the world Iived in at least. Instead of a media created pretend version where all the double standards live.
The carrot for her in this case was a trip to the free open air cinema in kings cross where we took what we would normally have for lunch. A change that feels so small but is massive for her and provided the opportunity to do something she wanted to do. It made me wonder as we sat amongst the crowd what others around us might have done or gone through just to be able to get there too. She felt so happy just in being there and I felt the kindness of four young girls as they shifted along a little to give us space where others had claimed theirs and had no intention of shifting along for others. Despite it being a free event. I was so grateful to those four girls in knowing what it had taken for my girl to get there. She would have felt heartbroken after all her effort that day but instead we had a lovely little spot tightly together as we watched the film. I felt her feeling of just being normal as we ate our picnic like everyone else for a moment.
I see P”s face in those really difficult moments in being so upset in seeing her go through this, but also his new admiration in seeing how hard she is trying. Providing so much inspiration for him to try harder. To swallow his own fears and anger and sadness and do what is required . He used to say to her “you just need to try”. It made her so angry. “I am bloody trying”. Now he is trying and seeing how hard it is, it is her that is inspiring him. Every single one of those moments when I see her fight inspires me to try to be “more”. To try to be a better human. For her but also for others beyond at some point.
Because oh my god hidden underneath this monster of an illness is a warrior, a superhero, a woman who knows how to fight. Her strength so very visible to me even in all her tiredness. Pushing her to the very limits of what she has in her, to try to fight back and reclaim her life.
Please give more support to mental health illnesses. Eating Disorders affect more and more young people and their consequences are absolutely horrific both physically and mentally. And like many things that impact on mental health, they devastate a once very happy person and their life. All the fluffy talk in the media doesn’t change the fact that in reality, it’s still hidden away in the shadows of shame and more needs to be done in actually providing the adequate help that they really need. Please don’t leave our beautiful young people to suffer in silence.