Pre-warning: This is a long post (like 99.97% of my posts). Sorry, not sorry.
I have quite a lot of rough patches every week, often at night time. It is not uncommon for me to spend the early hours of the morning walking around the city. More often than not I wake up in the morning wondering why the hell I was in such a state (and tired!)
I have also been doing a lot of reflecting while walking.
I think I have mentioned in brief that things took a turn for the worse in late December. I went to my hometown for Christmas. I stayed at my sisters new house and it was nice to begin with, although a little weird to see my sister independent and in her own place. I was supposed to stay until after New Year, but then something happened on the 28th of December and on the 29th I got the early coach back to Leicester.
I was not in a good place. I had stopped taking one of my medications a few months before; at first it was forgetfulness more than anything else, then it was a case of “well I didn’t take it most of last week so clearly I don’t need it.” My mood was dropping rapidly, and the obsessions that the medication was prescribed to treat became a lot worse. I cannot say it was stopping the medication that caused that, because it could just be coincidental, but what it did mean was that when I got back to Leicester I had a huge amount of medication sat in my bedroom.
I took them.
It’s hard to admit this. I am not sure why. Fear of being judged maybe. Fear of being open having an impact on how people see me, and on my future prospects. Fear of people who know me reading this, when only my family and a couple of close friends know about it.
I fell asleep in 2016, and when I woke up it was 2017. I was confused. Apparently on the day I gained consciousness I made a nurse call my Mum, before falling to sleep for 24 hours. When I woke up I made a different nurse call my Mum, panicking about the fact she would be worried about not hearing from me over New Year. The nurse told me that my Mum was saying I had contacted her the day before, but I did not remember at all. I do not remember anything.
I know it was serious. I know things could have worked out differently. But I feel extremely aware of the fact that for me personally, it was not the worst experience I have had. I was unconscious, and if at any time I was aware of pain or what was going on around me, I sure as hell do not remember it now. The worst part of what happened was feeling embarrassed. I had a catheter in, and when I tried to walk for the first couple of days I couldn’t. The medication gave me the side effect of a tremor when I was taking the normal dose, so the overdose left me violently shaking and my legs just buckled underneath me. But it honestly was not that bad.
Not that bad in comparison to other less “serious” things that I have done. There have been things I have done to myself that have been far more terrifying, far more painful, and to be honest, quite horrific. Largely because I was conscious. I have also been arrested while in a crisis, and when you are in that kind of state and locked in a prison cell for 16 hours, I can tell you that you leave even worse than you were to start with.
I have been thinking about these things a lot while walking, and the consequences of the suicide attempt; I was assessed under the mental health act, and told I had a choice between voluntary admission, or being sectioned. I agreed to go in voluntarily, which I am beyond relieved about. I got myself out quick, and I mean quick. Even the psychiatrist admitted he would not normally let someone out as fast as I got out. I was determined. I was thinking that if I stayed in there I was choosing to fight, and if I was going to choose to fight, I would be far better off fighting at home.
The hospital environment was bad for my eating; I was not eating at all and my weight was dropping, and I felt like my anorexia was re-gaining control shockingly fast. I knew if I stayed in there I was going to find myself with more problems, rather than less. I was dizzy and light-headed, and more to the point, it was making me feel better. I knew that was not good, and I knew it needed to stop. I was also due to start an internship, and that felt extremely important to me, and I made it very clear to the psychiatrist. I knew that I needed to prove to myself that I was capable of doing it, and that not doing it would have a really negative impact on me. I was terrified, of course. I wanted to run a mile, make up excuses not to do it, and avoid facing my anxiety; but I also wanted it, badly. I wanted it more than I was afraid of it, and doing it was one of the best decisions I made. In fact, in January it was just about the only good decision I made.
I was scared. I begged and begged my way out of hospital. I jumped through the hoops. I did what was expected of me to prove I was safe. I gave them no reason to use the mental health act against me again. It could probably have gone two ways; it could have gone badly. I remember getting home and while I was insanely relieved to get my freedom back because I cannot cope being stuck indoors for a whole day, never mind longer…I walked into my house very overwhelmed. I panicked. I thought I had made a mistake. I remembered what things had been like leading up to the admission, and as to be expected, I was doubting my ability to cope.
It also could have gone well. And it did. Sometimes there is such thing as ‘positive risk taking’ and this was that.
I still get myself in bad places. Having Borderline Personality Disorder means I often get myself into the worst kind of states, and then several hours later I am thinking “Girl, what was that about?!” It is extreme, a little dramatic and very frightening; I know I can do things that feel right in the moment, that in less than 24hrs time will seem ridiculous.
At my worst points, and on my walks, I have established some facts that help me to keep safe:
- I want my life to mean something. I do not want to be remembered as the girl who ended her own life. I want to do things that help people, and make my mark. I do not care how big or small that mark is, but I want to make it. Even in the darkest of times, the idea that in my lifetime I might make a difference to a single persons life, feels like a good enough reason to fight.
- People. And I do not mean fighting for people, or because people love me and losing me would hurt them…but that there are people who have done so much to help me, and I just cannot chuck that away. My Mum and sister have stood by me through thick and thin, even when I least deserved it. And professionals including my previous psychiatrist and various people at my secondary school, college and university who have still believed in me when I lost all hope, who have fought for me and simply never given up on me.
- Things can change for the better, and quickly. Just as things can get suddenly worse, they can get suddenly better. There are endless nights I have survived, and woke up relieved. One of the hardest things to do is be in a state of despair and believe that it is not permanent, but one thing I remind myself is that change is actually the only thing in life that is guaranteed.
- One of my common thoughts when struggling is that I have been fighting for so long, and that giving up is only logical. My mentor at university challenged this by saying that surely having been fighting for so long is a reason not to give up now, not to throw all of that hard work away. I’m not going to lie, when she first said that I was thinking that she did not get it, and it was a load of rubbish. BUT, on reflection, it is true. I did not come this far, to only come this far.
- Future treatment. During a recent bad night it hit me; I have an opportunity to go back to the therapeutic community and dedicate some time to working on myself. If I truly put everything into it, and do not self-sabotage it, it could really make a difference. I mean it might not, but it might. What is more the point is that it is with a service that I have gained a lot of faith in, with people I have begun to trust, which I did not previously. I mean regardless of whether the treatment method is ideal, I know the staff and other patients from experience are in equal amounts supportive and challenging; they are tough and sometimes hard on you, but in a helpful way. How can I give up before I have exhausted all options?
The biggest thing is, how can I throw my life away when there is hope for change, people who will stand by me, people who will not give up on me even when I do, and when I have the power within me in some small form, to do good?
If I give up there will be no more trying. And while often trying feels much more like struggling, I will take the struggle because struggling can lead somewhere. I hate struggling, but at least struggling means there is hope.
While there is life, there is hope.
I hope that if you cannot see a reason to make it through another day, you can hold onto the possibility that one day you will find a reason. I hope you know that although I am just a random stranger sat behind a computer screen who does not even know your name, I believe in you.
I hope you know that your kindness has to extend to yourself, and that your place in this world is important.
And I know this is cheesy, but I hope that you know that I am a human. I am real. And I am always only a message away. I care.
I have *stuff* going on, and *stuff* in my head, but I seem to be having a few seconds where it comes into my mind, and then I push it under.
Some things happened in my family in April, and then it got took further in December. We heard from the people dealing with the *stuff* today. It has been really quiet since December, and over the next couple of weeks it seems like it is going to suddenly get quite busy with it all. It is like the calm before the storm right now, and I know it is only going to get harder. I did not initiate the *stuff*, but now I am involved in it. It could take a year to be dealt with, and the “ideal” outcome really is not my ideal outcome. I am kind of questioning why I am doing this. The guilt is awful, and I know the guilt should not be mine, but when it is family, it is hard. Family. Family should be all loving and stick together, and when you are basically potentially destroying your families lives, it is hard not to feel guilty. But I suppose the reality is these people are not my family. They were. Technically they are. By blood they are. But that is where it ends now. It is terrifying how much things can change in less than a year.
I also hate that I cannot talk about the *stuff*. I cannot talk about it because it is private and personal, and scary, and also probably for legal reasons. It makes it hard. I do not have “support” at the moment, but that is likely to change on Friday. I am terrified about Friday. I am being assessed for a different mental health service, after being chucked out of the other. And a non-mental health service is attending the assessment, at my home, because they want mental health services to know what is going on with my physical health so that everyone is talking to each other. I’m not keen on this; I like to tell people what I want them to know, I like to be in control of who knows what. Nor am I keen on them all coming to my house. I will be glad when Friday morning is over. It has been hanging over me all week. I am barely sleeping, and we all know lack of sleep is never a good thing. It would be nice to fall asleep without hours of waiting for it to happen, and it would be even nicer to stay asleep. My medication does not seem to be helping, which is odd.
I have been looking, and applying, for graduate schemes. In the back of my head I know that my plan should be to take a year out, or at the maximum, carrying on studying. The service that chucked me out, do want to take me back on once it has been a year from discharge, if I am “ready”. It is just such a huge commitment, both emotionally and in terms of time – it is a day programme for 12 months, plus a few months before and after at reduced days per week. I do not know if I can face going back there, but I know that is not a good reason not to. I also do not want to invest into going back there, and it not work out. I cannot handle failing twice. I was supposed to go and do it during my masters, and that plan fell apart when I was chucked out. They probably would not describe it as being chucked out, but that is the reality of the situation.
It is also the whole taking a year out for “treatment” thing. It feels bad. It feels like failure. I kind of want to stop applying for jobs and graduate schemes, purely because I do not want to end up in a position where I have to turn interviews or an offer down. Like, what if I get a fantastic opportunity that could help me with my career? That has the potential to be the stepping stone into my ideal future, and I have to say no, sorry, because I am going to be a “patient”. I do not want the patient identity to be everything I am for a year. I also know if I had a physical illness I would feel differently. But it is not really something you can whack on your CV. And it is hard to feel OK with explaining a gap in my CV when it is for what it is. If I had a physical illness I would just say “I had a year out because I had (insert illness)”…but this will never be that easy.
But then, what is one year if it changes my life? I am not going to sit here and feel sorry for myself. I have to turn whatever choice I make into a positive. Nothing is bad or good, it is what you do with it that makes it bad or good. I firmly believe that. A positive mental attitude is required.
I know the sensible thing to do. I just do not like it.
This was not the situation I was supposed to be back in, again, but it is the situation and I can own it, or I can let it control me. I do not have to let the “patient” identity be my identity, even if I go down that route of taking time out. I can volunteer, I can write, I can do other things.
And at the end of the day, other peoples opinions are not really that important. If people do not like what I am doing, or think less of me for it, that really is not my problem. And will people even do that? Or am I stigmatising myself?
I am really interested in the concept of the “stigmatised” assuming the stigma is there, and paradoxically causing themselves to be stigmatised. I am probably guilty of it. Is being open really as bad as it feels? If I take a year out, and then go to an interview and respond to the questioning of what I did in that year truthfully, and tell them the other things I did in that year, will people think what I think they will?
We cannot assume what people are thinking. People are entitled to be given the chance to think for themselves.
Mark Austin has admitted to The Guardian that he told his daughter, who was suffering from Anorexia Nervosa, to “starve yourself to death.”
Undoubtedly it was not an easy thing to admit to, but the reality is that when you are a parent with a child who is quite literally starving themselves to death, you get desperate. I can recite the desperation of my parents when I was destroying myself. What do you do when your 15 year old daughter is laid up in bed, and has not eaten or drunk for the last week? We all say things in anger, but more than it being in anger, it is pure desperation to get a reaction, to change the situation. It is hoping that she will get up and eat.
The problem is, she won’t.
People close to me went to some shockingly desperate extremes that make me want to reach out to Mark Austin and say “it’s ok, really it is ok”. Some of the extremes people around me went to were not ok.
This admission from Mark is to make people see that eating disorders are a serious illness that cannot be ignored. People suffering with eating disorders are not selfish, they are not attention seeking, and neither are they vain. In order to help someone get better it is important, vital in fact, that we realise that this is a serious, life-threatening condition, that is going to require much more than anger, threats, or “just eat” comments to treat. It is a mental illness that requires treatment. It is a mental illness that carries the highest mortality rate of all psychiatric disorders, a fact, that even today still shocks and terrifies me.
There is no easy fix to an eating disorder. There was nothing my parents could do, not really. They could love me unconditionally, they could get me the help I needed, but this was something that was going to take a lot of time, and professional help.
At 15, I spent a year on a child and adolescent psychiatric ward being fed, some time of which was spent sectioned under the Mental Health Act because I could not see that I was ill. Life consisted of breakfast, snack, lunch, snack, tea, supper. I was fed all of the foods we are told not to eat. Doctors were forcing me to do the opposite of what most GP’s are telling their patients to do. Sponge and custard after lunch and tea, toast and cereal for breakfast. Insane amounts of milk (full fat of course!) and fruit juice. No exercise. Meals were followed by observations where we would have to sit in the lounge, watched by staff, being told off for so much as tapping our fingers. Bi-weekly weigh-ins where we were woken up, taken to the toilet where we would have to prove we had been, and were not water-loading, followed by the dreaded stepping on the scales.
It was a strange time of my life. I forgot the real world existed, I almost thought the real world was on pause, waiting for me. But it was not, and when I was finally discharged I had gained 37lbs which I lost in a matter of weeks.
I was not prepared for life outside of the hospital. It was a bleak time. I started giving up on the idea of ‘recovery’. I thought at best I would manage to survive.
Here we are, nearly a decade later. I underwent further treatment; I had outpatient treatment in the Child and Adolescent Mental Health Services (CAMHS), plus outpatient and day patient treatment in the local adult Anorexia Nervosa Service including some time on a gastroenterology ward in a general hospital following a bad relapse…and here we are! (I make it sound simple, ta-dah! It was not.)
Am I 100% fully recovered? Nah. Am I surviving? Yes. But more to the point, I am doing more than that. My eating disorder does not have a devastating impact upon me anymore. I can go out for lunch, eat in front of people, have cake on my birthday and roll my eyes when people tell me how they no longer eat chocolate (more fool them!). Most importantly I have the energy to live my life. I will admit that my eating disorder still lingers there, constantly. I still do not get a day free of it, which is sad. Ten years of not a single anorexia free day. However, it is not loud any more. Yes it is always there, but it is floating in the background. I control it, it does not control me.
How did I get here? Time and professional help, plus support from the people around me.
This is not the sort of illness that can be easily fixed. There is no magic wand. There is no overnight transformation. It requires a lot of patience, specialist care and baby steps – but it is possible.
Mark Austin did not get it perfect. No parent gets it perfect. I do not read his account to The Guardian and feel shocked. I do not think anything negative of him, in fact I applaud him for speaking up. I know what it is like to go through this kind of illness. It is arguably harder for the family than the sufferer when the person is at the worst stage of being unwell, with no sign of wanting to get better in sight.
What is not acceptable is to have professionals that do not take it seriously, like the GP who met me aged 14 and said I would be fine after my exams, and who never saw me again because I was sectioned in hospital; this is what is not forgivable. It will not be “fine.” It is not a problem that will go away however hard you try to ignore it.
We need to be willing to face up to the reality of eating disorders, and the support that people need. Recovery is not easy or quick, but it is possible.
I was at an appointment the other day. The staff were aware of my mental health problems, and they asked me what I do in my free time. I said at the moment I am working and at university. She looked shocked. She then said “unpaid work, though?” because obviously us crazy folk cannot hold down a paid job. I mean, what kind of fool would pay me to work?
It annoys me. Number one unpaid work is a brilliant thing to do for experience, and for giving something. Number two, why would you assume my job is unpaid?
I was then further annoyed when she said I needed to come back on Monday to see their consultant. I told her I had work, and couldn’t make it. She looked at me and said “well, you have to have see the consultant” and then booked me an appointment any way. I was stood there thinking ‘yup, please ignore me, my words mean nothing’.
I honestly do not think that if I was ten years older, and not in for something mental health related, she wouldn’t have ignored me. But hey, I am crazy so my job cannot be that important, right?!
We think that we have progressed with our attitudes towards mental illness, and my gut reaction is to say some progress has definitely been made. I mean, we do not lock everyone away in asylums anymore, people are not oblivious to mental illness, and people know what depression is. Mental health is talked about more. Being homosexual is no longer a sign of insanity, and we do not drill into peoples brains hoping it will ‘fix’ them like we did in 1935.
My research in my undergraduate degree proved that making a definitive conclusion is not that easy. Some things have improved, some things have not. Do you know what schizoaffective disorder is? What about obsessive compulsive personality disorder? Unless you have an interest in mental illness, or personal experience, probably not. Even spellcheck does not think ‘schizoaffective’ is a word.
While general attitudes have become better, I would argue it is something we are fine about as long as we do not have to come face-to-face with it, and for a lot of people mental illness is something that affects others, not themselves. Did you know that only 46.9% of disabled people are in employment? Which is a gap 33.1% higher compared to people without a disability. The disability employment gap is one of the most significant inequalities today.
In 2015 the Conservative Party stated that to half the gap they would need to change policies, practices and public attitudes.
Not all disabled people can work, fact. That is why there is no goal to get rid of the gap completely. But some can, and some want to. It is easy for people to respond to this huge gap by saying that disabled people do not want to work, that they want to live off benefits, and all of that other rubbish that realistically applies to a very small percentage of those with disabilities, and actually also to a larger number of people without
I do not personally have much of an issue with the term disability. I would agree that I do have a disability, and that it can be extremely disabling. But it can also be worked with if I am surrounded by people who are willing to be understanding, and to provide me the right environment to minimise the impact my disability has on my ability to work, and to succeed.
Starting my recent internship has made me aware of the difficulty I would definitely have to work full-time, while juggling my medical appointments. I can see why this could be unattractive for an employer, and even for me; even if I managed to find an employer who was happy for me to take time off work for appointments, it would mean that my disability would still be impacting my ability to work full-time, and receive full pay. But this is the thing. I would not think about that; that is something I have to live with, but being discriminated against, is not.
I would be overwhelmed by the amazing support of my workplace to enable me to work. I would arrange my appointments as best I could to avoid interruption. I would stay late at work if I could, or arrive early. I would give everything I could and more, and being able to have my necessary appointments would actually boost my productivity at work, compared to if I was having to delay them, hide them, or become stressed at managing them.
The thing is, people can discriminate against people with mental illness, but mental illness is never going to discriminate against you. You might have a negative attitude towards those with a mental health problem, but they are still going to come into your life. It is going to affect your colleagues, employees, friends or family, whether you like it or not. Whether you think it is something that happens in your life or not.
More scarily perhaps, is that one day it might be you. You could be the top dog in a major company who does not take particularly take an interest in disability in the workplace. You might be a bit irritated that your PA, Janice, has to take two hours off on a Wednesday afternoon because she has a one hour appointment with her community psychiatric nurse, plus has to travel to and from the clinic. You will forget Janice stayed at work for an extra hour on three days last week. You will forget Janice doesn’t take lunch breaks, and always emails back at weekends. You will forget that since Janice started her role, she has made your day-to-day life easier, and taken on many extra roles that you never expected her to take.
You will be reluctant to hire the best applicant for your new events manager because she disclosed that she has physical health problems that will mean she has to take some time off work once per month to travel to a hospital out of the local area. You will think that you need someone who does not have these needs, and that they are not suitable for your company, just like the principal that once said to my support worker that students with severe mental health problems are not going to achieve A-Levels, so why support them in trying to do so?
And then fast forward, it is 2027. You have been getting very stressed at work. Janice left, and her replacement is struggling. Your wife has been working away a lot, your kids have left home, and it is like you never see neither them or your wife any more; she admitted a few months back that she is not happy in your marriage. Your mother has Alzheimer’s (which is a mental illness too, but for some reason that doesn’t count) and she is deteriorating. Last time you saw her she did not know who you were. You have begun thinking a lot about your childhood growing up, and how she used to be. You keep remembering things you had forgotten; maybe your childhood was not as rosy as you had convinced yourself. You remember your father being very violent to your mother, and having to witness that. Bit by bit it is coming back to you, like a tap that no matter how hard you tighten it, it just will not stop dripping.
You feel low. You know you do. You say low, because you do not want to say depressed. Men do not get depressed, not strong men like you. Not top of the company men. Not men who earn £100, 00o per annum. Not men who are well educated, and whose parents were too. You tell yourself you will ‘snap out of it’ soon. Maybe you just need to work harder. Only weak people take a step back, take a break. But it is getting worse, and you end up going to see your GP. I mean, he will just say you are fine.
Well, apparently not. Apparently you have signs of depression, but mental illness is not something you will ever experience, right? He must be wrong.
I started my six week internship on Monday. I was meant to start two weeks ago, but unfortunately ended up in hospital twice.
I had no belief in myself that I could work. I thought that there was no way I am confident enough…no way I was going to get myself there. The two hospital admissions served as further evidence of this. Fast forward to Monday 8:20am, leaving the house to get there…and it hit me…the “normal” worries. Can I do the work? What if I can’t? What if I make them regret taking interns from my university? I had been so worried about not being able to even get myself there, that I had somehow forgotten about the more important worries.
Well, it has been fabulous. I am fortunate that both my university, and the place I am working for, have been very accommodating, and although they do not know it, have helped me stop myself from self-sabotaging.
I am working for a charity, as a Campaigns and Communications Officer, working primarily on one campaign. Everything is good. The routine and structure is good for me. The people I work with are lovely, the charity itself is amazing. When I applied for this intern scheme, I never expected to be so lucky to get the perfect match; not only am I doing a role I would love to do in the future as a career, but I am also working for the kind of place I would love to work for.
My work is especially geared around social media – scheduling posts and analytics. As well as drafting emails, promoting our campaign strategies etc.
My normal life is quite unstructured, especially as I do my own research at university, and therefore have minimal contact time. My sleep routine is less than healthy, and my iron levels dropped in December to borderline transfusion level. I felt like the odds of coping with working were against me. And yet the hours go SO quickly. I would work here part-time for free, without a doubt. I am so interested in what I am doing, I find myself researching and keeping an eye on one of our campaign strategies as soon as I get home. Heck, I check one right before I go to sleep!
The hardest part has to be managing my medical appointments. At the moment I have no contact with mental health services, other than the crisis team which is due to end tomorrow (and they can see me late evenings, so outside of office hours), but I am seeing two outpatient clinics for physical health problems plus another service. I feel like I live in hospital at the moment. I was at the hospital yesterday, and the day before, and two days before that. I finished work just after 5pm today, and went straight to the hospital. Tomorrow I am back at the hospital again for an X-Ray and then for a fracture clinic appointment. Then I am seeing my support worker at university, followed by the crisis team. I want to fit the gym in somewhere, but I am not sure where!
I am kind of relieved that my referral to CMHT is being messed about with. Every week I am told this is the week I will hear from them, and every week I don’t. I’m not sure I have the time for them right now, nor do I particularly want to engage in mental health services anymore. I was discharged from the two services I was under in November and December. The November one was due to being classed as “too high risk” for what they offer, and the December one was because the person I saw retired, and I no longer required help for that aspect of my problems – it was the Anorexia Nervosa service from where I am originally from, and I am doing well in that respect. I must admit it is nice not to travel back home every week! I’m finding I prefer not being under anyone at the moment. It’s a nice break from 10 years of mental health services. Whether it’s a good thing, or a bad thing, is debatable.
The service I was discharged from in November want me to consider returning there in a years time, when I am more stable. But it’s a three day per week day programme, for one year. Plus a prep group before you do that for a maximum of 6 months, and an after group as well, for six months. As a member of the main programme you are also expected to run the prep group in blocks, increasing it to four days per week at times.
I’d rather not go back to a place that made me feel the way it did, with people I would honestly rather never see again in my life. I’d rather do my PhD full time without juggling therapy, or get a full time job in the field I am passionate about.
Right now, I am focusing on managing this internship and my medical appointments, and I need to make sure I get on top of my MA work. I will re-assess after the internship.
For now, I’m going to focus on the fact that I am doing this, and that I am more capable than I realise. I don’t know how many positive experiences it is going to take for me to learn this!