Two of my favourite bloggers (my favourite people too 🙂 ) seemingly coincidentally posted about virtually the same topic yesterday, and it got me thinking. Fiona and Jessica both wrote about their experiences of mental health issues that pre-dated their eating disorders, and how their difficulties had been misdiagnosed, misinformed and mistreated. I have a similar history. Ever since I was tiny I have had problems with anxiety. One of my earliest memories is coming downstairs after I’d been put to bed because I felt ill. I would hover on the stairs outside the door to the sitting room counting up to a hundred before I went in because I was scared that mum would be angry with me for getting out of bed, and somehow counting made me feel safer and calmer. Sometimes I would ‘have’ to count up to two, three, four, five hundred. Sometimes I would chicken out altogether and go back to bed instead. On the nights when I did open the door, my conversation with mum would go something like this:
Me: I don’t feel well
Mum: What’s wrong? Do you feel sick?
Mum: Sore throat? Headache? Come here…you don’t have a temperature. What’s the matter?
Me: I don’t know, I just don’t feel well.
Mum: You’re OK, go back to bed. You’re probably just tired.
I was about four when this started happening. Although I couldn’t put it into words as the time, my ‘not well’ feelings were panic attacks. I would lie in the dark worrying that there were snakes at the foot of my bed about to bite my toes or that a monster was coming to eat my family and I would suddenly feel all…wrong. Ill somehow. Like I was sure I was going to die, even though neither my stomach, my throat or my head hurt. I felt disconnected from my body, kind of light headed. Off I would go to try and explain this to mum, who obviously wasn’t expecting her four year old child to be having panic attacks, so just assumed that I was trying to wheedle my way into staying up later and sent me back upstairs to worry some more.
When I was little I had a lot of unexplainable physical problems. I would quite often be carted off to the doctor, only to be dismissed as attention seeking or exaggerating. I wasn’t looking for attention, not from what I can remember of my thought processes from 15-20 years ago. Strange things kept happening to me. My heart felt funny, I kept going dizzy, I felt constantly nauseous, I had a really sensitive bladder and needed the loo every half an hour, I suffered from insomnia, I had clear symptoms of obsessive compulsive disorder, I developed motor tics (and the occasional phonic one, but not to the extent that I was diagnosed with Tourette’s – when I finally saw a neurologist two years ago he said I have the NOS version, a general tic disorder). Late at night I would often experience a really weird symptom and I still don’t know if this one was neurological or anxiety induced – I would start seeing neon snakes before my eyes, then it would feel like the world was shaking violently for ten or twenty seconds, then everything would go back to normal. No accompanying headaches or sickness so I presume they weren’t migraines.
All this left me with the clear idea that I was suffering from something dreadful and probably terminal. I became a complete hypochondriac. When vCJD was in the news, I spent a summer thinking that my balance and coordination were getting worse. When I heard about aneurisms I thought that every headache was a sign of impending death. When I pulled a muscle in my chest it was a punctured lung (and of course the huge wave of panic meant I suddenly started finding it hard to breathe, so that took a while to talk me out of). Imaginary lumps were cancer, dizziness was a brain tumour. And if I wasn’t obsessing about my body defecting on me then I was convinced I was going to be murdered or hit by a car or…I don’t know, that a meteor was about to fall out of the sky and accurately hit the 20cm moving target of my head. I was always being told that I worried too much, or that I was oversensitive. But to me those fears were REAL. The doctor said there was nothing wrong with me, but as far as I was concerned at six, seven, eight, nine years old, he must have missed something. All this weird and painful stuff kept happening to me and all the adults would say was that there was no obvious cause so I should ignore it. How could I? How could they expect me to trust them over my own senses?
This seems to be a common theme in the experience of people who later go on to develop eating disorders – somehow, many of us learn that we cannot trust anything of ourselves: our brains, our bodies, our ability to cope, our appetites – and so we start trying to rigidly control every aspect of ourselves and our lives, structuring it all on intellectual rules rather than biological and psychological needs. I know the issue of ‘control’ in eating disorders is a cliche and conversely I am really interested in the research being done into the genetic basis of eating disorders, but I also can’t argue with my experience, my memories of my thought processes over the last decade or with the hundreds of similar stories I’ve heard from other people with eating disorders.
Despite all of this I was quite happy. I had occasional panic attacks, OCD, a tic disorder and I worried far more than is normal or healthy, but I was also intelligent and fairly well liked at school, participated in every after-school activity group imaginable and things were always busy at home, so I was otherwise occupied. But in 1994 when I was nine several things happened to unbalance me. My parents were already stressed out (five children, huge financial problems, post natal depression, a miscarriage, a breast cancer scare) when one of my little sisters developed an overwhelming phobia of being sick when she was 7 and I was 9, and virtually quit eating for the next three years. Our dog Lisa who mum had had since she was a puppy had to be put down at the age of 15. I fell out with the girl who had been my best friend since the age of five and I also moved up from my friendly little primary school to the much larger and scarier middle school. One of the loudest, bolshiest girls in my new class in my new school took an instant dislike to me and all my primary school friends deserted me so they wouldn’t be caught in the cross fire. Before long there wasn’t a single person in my year group of 100 or so kids who would stick up for me or sit with me at lunch.
I don’t know, maybe the next decade and a half of full blown mental illness could have been avoided if someone had stepped in then. But what actually happened was that my teachers decided that the best course of action was to ignore it because surely it would ‘blow over soon’, then occasionally tell me that I was just being oversensitive if the issue was forced to the surface. I internalised and believed everything said to me. From the teachers: the bullies were just being girls, I was oversensitive, overexaggerating, melodramatic, lying, attention seeking. From the girls themselves: I was a loner, a freak, a loser, ugly, no one would ever love me, I was pathetic, everything I did should be laughed at. I didn’t tell anyone what was going on or how I felt about it. My parents guessed because I wasn’t coming home with friends anymore, wasn’t going to sleepovers, I was quiet and withdrawn and my mum found a piece of paper from my diary saying that I wished I was dead. At eleven years old I was suicidal. She rang the school begging them to do something and were told by my headmistress that ‘bullying doesn’t happen at my school’. It was always my fault. Everything was always my fault.
It wasn’t my fault. I had anxiety disorders from a young age (genetic predisposition, environmental triggers), a stressful home life (not my parent’s fault either, but just because no one is to blame doesn’t mean it didn’t affect me), and presumably my nerviness made me an ideal target for bitchy pre-teens. Kids will pick on anyone who is a little bit difference. Children who are intelligent, left handed, vegetarian in farming country, poor, anxiety disordered and brought up going to Jehovah’s Witness meetings…hmm. I guess I stood out a little bit!
I don’t want this to come across as me being all ‘woe is me’ because I don’t feel that way. I got over being bullied. I don’t feel angry towards the people who did it anymore. Some of them turned into perfectly nice human beings as they got older. I can’t blame them for being swept up by the crowd, it happens to a lot of kids. I don’t blame my teachers, I am sure they thought they knew what they were doing and that it was for the best. I certainly don’t blame my parents. I am not that much of a cliche. And most importantly, I don’t blame myself. This is not about blame.
I do wish, though, that things were different. When I was showing signs of serious psychiatric illness at a ridiculously young age I was told I was oversensitive. When I was suicidal from being bullied I was being melodramatic. When I developed an eating disorder and started self harming that was attention seeking and selfish. When I had bad reactions to medication and ended up getting worse, that was my illness getting worse and they WERE helping me, what more did I want? When I was in hospital I wasn’t sick like the schizophrenics, I should pull myself together and stop wanting to kill myself (yes, please tell me how to do that and I’ll be glad to get out of your hospital). Less dramatically, I am incredibly sensitive to alcohol, caffeine, lights, crowds, loud noises, rough fabrics. Quite often my nervous system tries to send me into a panic attack with no psychological trigger at all – just something like an unexpectedly loud noise. I am very easily overstimulated. I find it impossible to read while the TV is on. I can’t study when music is playing. I can’t get to sleep if there is someone in the corridor talking, or if the landing light is still on. I can’t relax in my room when one of my brothers doors are open and noise from their TV or music is sneaking through my walls. I get tired quickly. I don’t enjoy parties, pubs or clubs – even with parties at home when it’s not being out at night that’s making me anxious, the noise and the people are just too much.
And ALWAYS, always, people tell me that this is wrong. That being overaroused (in the physiological sense, lol) far more quickly, easily and painfully than most other people is somehow something I should be able to override by force. Like an appropriate response might be ‘oh my God you’re right, I will make my nervous system behave immediately! I see the light!’. Like this is somehow my fault. IT’S NOT. It is just how I was built. I am very physically sensitive. My IBS and food intolerances are not character flaws. My dislike of crowds and noise is not something I can or should ‘get over’. My discomfort in high or low temperatures that other people are fine with is not a personal weakness. My inability to drink caffeinated coffee is not a matter of willpower. It is not under my conscious control, it is not something I can change by force, it is not the case, for that matter, that I should just carry on as everyone else does and ignore the pain and discomfort. Some people are tall, some people are short, some people are bald, I am physiologically very sensitive. Physiologically. Psychologically I’m stubborn as hell. Physiologically my adrenal glands shoot off erratically if a car backfires or if I try on a top made of that nasty clingy material. This is just how I was made. Forcing me to act otherwise makes me ill.
I’m not saying that everyone should bow to my every whim just so they don’t upset the poor delicate little flower, but I wish that people who should know better (teachers, psychiatrists, relatives with their own mental health problems) hadn’t spent the last 20 years telling me that there’s something wrong with me. The only thing that is wrong with me is that I have spent decades ignoring my feelings and experiences and trying to force myself to squash my anxiety and depression because other people told me that it had no cause and so wasn’t real. Fuck them. I am a good person. I’m not making this up, I’m not trying to be difficult, I’m not looking for attention. Neither are, or were, any of my friends. Having depression, bipolar disorder, anxiety, an eating disorder or any other psychiatric disorder does not make you a bad person. It does not mean you are weak or lazy or oversensitive. They are illnesses. That doesn’t mean you have to just accept and live with them either, because it is entirely possible to recover from all sorts of shit with the right treatment and some respect for your individual differences, but it does not mean that there is anything wrong with you as a person.
Katie hath spoken 😛 and on that note, I am going off make my lunch. Being passionate makes me hungry!