An Opportunity Missed and My Story

A belief I hold quite strongly is that that treatment for less ‘severe’ mental health problems should be available reasonably quickly and that should be coupled with a general willingness to accept and talk when things just seem not to be going quite right. This means so much to me as I know that in a more validating, approachable environment where I wasn’t expected to simply ‘keep going’ for everyone in a British stoic sort of way, where borderline difficulties only seem to fester, my problems wouldn’t have got to the life-threatening and life-altering state they have. In other words much of my suffering could have been prevented. In my case this was quite complicated- tied in with basic middle class- British expectations- both societal and familial with a hushed up history of mental illness, along with, crucially, my own expectations of myself but also the reality of a situation in which an open, validating approach just wasn’t really possible or manageable. And this was within a supportive environment so I cannot imagine the unbearable situations such as abuse that people have told me about. Furthermore, the recent statistics that have come to light about the fact that the average waiting delay of 6 months to get IAPT (early access psychological therapies) in the UK means that 1 in 6 of those waiting will attempt suicide are shocking and absolutely heart-breaking.

This is the beginning of my story, I suppose, and I urge anyone out there struggling with low mood, confusion or anything, whether what a doctor may call ‘diagnosable’ or not, to talk about it honestly with someone, whether family or friend or mentor etc. As in my opinion it can prevent things getting more serious and improves one’s mental health generally, irrespective of whether there are abnormalities such as illness there.

I had a pretty idyllic childhood, surrounded by family in a nice area with two wonderfully protective siblings and just the normal day-to-day strains of family life like arguments and things. That said, when I turned about 10 my Mum and brother started to get unwell and my Dad had to undergo a series of biopsies and scans as he was thought to have prostate cancer (he didn’t in the end.) In the same year, I had an accident while playing sport that meant I was almost blinded in one eye (narrowly avoided) and told I would have permanent scarring and structuring damage on my face (I turned out miraculously to have neither seriously) but for a few long months I had to go round with a swollen (double the size) one side of the face which was badly bruised, I had to walk around to horrified stares and laughing whispers. I remember crying so much one night, just because I didn’t understand why people would do such a thing- and if they were laughing at me, people with permanent deformities must have to face it their whole life. I thought people were so cruel, as I’m quite an idealistic, empathetic sort of person- imagining and seeing people in pain in this world really got to me. That said, at the same time I was seeing my brother and mother in severe pain and concluded that I was just being attention-seeking.

A year later, a traumatic few years began for my family. I was 11 to 15 at this point.
As a result, of a mistake by a doctor, my brother’s illness became very life threatening – he was constantly freezing and in too much pain even to walk to the bathroom on his own at times. The doctors had no idea what was causing it. They thought leukemia, lymphoma, toxoplasmosis, arthritis. They gave him chemotherapy, which seemed to help despite making him so sick and hungry his already low quality of life, was lowered. I was only told we couldn’t talk about it at home as it would upset him and he needed to stay out of hospital, and do his important exams as the doctors were worried about how it would affect his mental health, but I knew it would upset my parents as well. They told me regularly it wasn’t serious but I was old enough and intuitive enough to know otherwise from the cries at night I sometimes heard and my brother’s constant hacking cough. I also couldn’t and wouldn’t talk to my friends about it as all they seemed to talk about was boys and make-up and on the few occasions I tried, I underplayed it significantly as I still thought I was being attention-seeking and believed I was lying to myself (as I was about lots of things, regularly to others) about it all at this point, and I couldn’t actually say what it was. People know cancer is serious. But they don’t know that, what is now diagnosed as an‘auto-immune overlap connective tissue disease with Idiopathic Thrombocytopenic Purpura and IgA deficiency attacking the joints, blood and bones’, is serious. All I was told was that someone needed to be at home with him at all times (even if it was his 5 years younger sister) as if he bruised himself- he would begin bleeding out of his eyes, ears, mouth and nose and his brain would hemorrhage and would go into anaphylactic shock and I needed to call an ambulance immediately, although as he had a problem with his immune system if he had a bleed he could not have a blood transfusion- so I knew he would affectively be dying. I got given an instruction sheet with what to do, which I only lost and still to this day can’t really forgive myself.

After, helping him with his muscle exercises each morning and pretending to younger-sister laugh so he wouldn’t feel guilty or ashamed when he was in pain when actually I was screaming inside, I went into school each day worried that I’d never see my wonderful, intelligent, protective big brother again. I’d then spend as much time doing activities as I could until 9 most nights, come back see my brother still alive lying on the sofa- feel a rush of, what I now know to be, relief and anger, and go straight to my room to try to do any homework. It was around this time- I began to experiment with self-harm and began to have what I realize now to be suicidal thoughts when I crossed roads. I was a nightmare to live with I was moody, unhelpful and childish but it was because I wanted to help my brother and my Mum who also has serious auto-immune problems (not life threatening.) I asked my Mum to let me give my blood and bone marrow and anything I had to my brother weekly, as I’d seen in doctor shows-where the siblings life is saved, but I was helpless, in fact I knew by acting out I was actively unhelpful. Also, over these few years, 2 of my grandparents and an Uncle (actually a cousin) I had stayed with for a few months died, along with my cousin’s mother and a friend’s mother at school. My uncle who was meant to be my outside of home support turned round randomly, as a result of already-shaky narcissistic mental health and his own father’s death, and came over screaming saying my parents had ruined his life and tried to get me on his side inappropriately and repetitively. Furthermore, one of my Mum’s brothers was having a low period and the other is seriously autistic and had only just managed to get over the death of his brother 10 years earlier- so we had to hide everything from him, and I also got into a situation where I was caring for a seriously anorexic and a seriously depressed friend- both of whom were hospitalized.

My poor parents were dealing with so much- they hid it best they could from my tween-childhood and adolescent mind but I learnt to read their faces and actions not their words. I would sometimes walk in on my Mum shaking and try to comfort her, or walk past a closed door hearing sobbing and walk on so she wouldn’t be worried, knowing I’d heard. And my Dad, also dealing with a very stressful business job, was torn away from this terrifying situation daily in charge of the welfare of thousands of employees of a company, he gradually got very stressed by any sort of mess in the house- including non-existent crumbs and ‘dirt patches’ which were shadows, to the point he occasionally got angry and out of control. Furthermore, my sister was away for a lot of this time- abroad and at university and I couldn’t understand why she’d left me- although, I now know the fear of not being there was possibly as great as the fear of being there.

I was trapped. We still had family meals, my parents were growingly respected members of a church who knew mostly nothing about what was going on, my school weren’t really aware of the situation and I couldn’t talk about it, and actually wouldn’t. Furthermore, when I met up with people, they only seemed to ask about how my mentally ill friends were- not me. The most that could be done, was when I went to stay with my family in Colombia for a few months to have ‘a break.’ And despite, coming back passionate, distracted and disillusioned about a future career in aid-work- it didn’t last long.

I was meant to be the youngest child- who was to cheer up the family after my uncle’s horrific death in a car crash in the Middle East. I was meant to be mature and the hero to save everyone but I couldn’t, and each day this world just seemed to be scaring and hurting me a little more.

That’s my story of the ‘traumatic circumstances’ that, as well as a biological predisposition, I’ve been told and now think for myself have resulted in my difficulties. I can only speak for my own experiences, but I believe if I’d had someone to talk to about what I was feeling then, openly and consistently, who was not as scared by the thoughts and feelings I was having as I was, I don’t think my problems would have gotten to the state they have done. I now know that, given the situation, how I was feeling was understandable and the thoughts I was having were normal, grief-induced, thoughts- although I still have trouble reminding myself that. For so long, I believed it was all my fault as I’d been told the suffering in the world was as a result of my sin and why else would everyone close to me be ill or dying apart from me?

This was a tricky situation, and actually I don’t believe it could have been done any differently given that we all needed to survive- so despite, anger that I sometimes feel towards my parents where I think I unconsciously feel the need to blame someone, I don’t think blame can be put on anyone. I was just the wrong age and temperament I suppose, but that’s just me and actually other than the emotion dysregulation that is almost unbearable to live with (rather than straight unbearable a few months ago), I wouldn’t change it because I’ve had to work bloody hard and survive gut-wrenching pain to learn to ‘accept myself,’ and have had to willfully start ‘yoga,’ and see a ‘therapist’- these apparently mortifying things, I swore to myself I’d never do! But then that’s the accepting, positive mood I’m in right now- ask me tomorrow if I would be a different person and I’d probably have a different answer.

Later on, I got more support all-round from various people and services, when things at home had improved a bit and my challenges started to show more outwardly, and as a result of that continued support, I’ve survived this last year and a half, with 6 months of hospital when that was necessary and consistent and honest support when out.
 When I’m in the right mind-set, I can actually see how many people are ‘rooting for me’- I love that phrase, and can occasionally even see a future for myself in whatever career or role I can manage. And many people would say I’m still young and that things have been spotted early, relative to the problem and people’s usual experiences of BPD so there’s hope there as well.

And…I’m finally talking, I suppose, perhaps too much, but people and professionals can survive that for a bit hopefully because this is new territory for me.

Talk about what’s hard when you can- and listen, when you can.


1 thought on “An Opportunity Missed and My Story

  1. I am so, so sorry that you’ve been through all that. I hope you really can continue to work alongside professionals and make further progress (I think writing can often be just as good as talking). I’m definitely one of those ‘rooting for you’ and feel privileged to call you a friend. Keep going xx

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