A letter shared with you…

So obtaining a second opinion about my recent diagnosis, because of the huge impact on my care it has had, has been my recent aim – but I’ve felt unwell to do it. However, being in respite has given me a *bit* of time so here’s the letter I have sent to my GP and have forwarded to a Psychiatrist I am in contact with from Leeds. If you have any experience similar to this, please let me know…

(p.s probs a few typos…)

Dear Dr (name removed for obvious reasons),

I am writing to ask your support in reviewing my latest mental health diagnosis. As you are aware, I have been unwell with an eating disorder for 10 years now – originating with Bulimia but developing into Anorexia and going back-and-forth. If you remember, I came to see you a few years ago when I first became really physically unwell and I appreciated your support and empathy back then, particularly as it was my first experience speaking to a doctor about my behaviours around food.

Despite having a long period of outpatient treatment, and 3 hospital admissions on specialist units, every single time I had faced recovery feeling stronger. It took me a while to realise it, but each time I wasn’t moving backwards, I was moving forwards. As you probably realise, eating disorder recovery isn’t linear by any stretch, and because my relationship with food/body has felt complicated and emotional since I was a young girl it has often been the case of five steps forward and two back. But always moving forwards and feeling stronger for it.

But in recent months that has taken a nose-dive. During my last eating disorder inpatient admission in Leeds at the end of 2017, I took an overdose (of the prescribed medication – the unit supplied me with about two weeks-worth even though I was only going on leave for 2 days); this was mainly triggered by the fact one of my friends from a previous hospital admission had just taken her own life, so I was feeling very vulnerable. As well as that being very raw, I was also approaching the ‘maintenance’ period of recovery which is the most difficult stage by far, and I had committed to the ‘full recovery’ programme which I was passionately working very hard, after 6 months there to pursue – despite not long before that admission, coming to accept that maybe I was to accept living with a Severe and Enduring Eating Disorder. Instead, I chose to fight for my best life.

Not long after this, I was completely devastated when it was decided that because of the incident, I had to be transferred back to the acute unit at Grimsby (Harrison House). It felt like all of my hard work had crashed into nothing, and when I needed the support most around my body image, and learning to maintain a healthy weight whilst managing my emotions it suddenly was no longer there. So I had gone from 6 months of consistent meal support, graduating to independence around food, and working very hard with occupational therapy about my plans for the future, to a general mental health unit where there was no structure around meal-times and no expectations for me to eat in a certain way. Without the dietician support, and emotional support around my body image, I was at a complete loss of what to do.

Shortly after this, as I had feared would happen, the Bulimia crept back and again I was back on the yo-yo I have been trapped on for 10 years. Since this shock of the sudden end to treatment that was going really well, and the binging and purging back in full force, I then did begin to feel suicidal at intermittent periods, due to the distress of those behaviours. And this is where I feel the misunderstanding has been with deciding on this new diagnosis. The original self-harm/suicidal behaviour stemmed from being at a very vulnerable place with my eating disorder recovery combined with the loss of a friend, which then became feeling the support I had placed hope in for a long-term recovery pulled from beneath my feet, to the dreaded binging and purging returning, to the point where I was getting into debt and feeling extremely hopeless. So a couple more self-harm/overdose incidents occurred as a result.

I strongly believe that if the first overdose (it was medically cleared when I got to the general hospital) in Leeds was accepted as an understandable ‘blip’ in the 6 months I had been there and I was able to pursue my recovery program, then I wouldn’t have proceeded to struggle with the urges to self-harm by overdosing the times after, because the Bulimia wouldn’t have returned as vicious as it did.

Due to these behaviours, despite being able to continue outpatient therapy with NAViGO for my eating disorder for some months after, the assessment for Personality Disorder was suggested. I went along with the assessment, but as I was again feeling suicidal due to the binging and purging, felt like my answers were swayed to the moment I was in, and not an accurate reflection or myself or my life as a whole. I feel like when you are in a certain state of mind you can associate any experience with the way the questions are lead. For example – when being asked about my past behaviours and any memories of overdosing, I said I had mildly ‘overdosed’ on caffeine tablets for a very short period of my teenage years – meaning I took a few more than the recommended, not with intention for harm – but because I naively thought that the increased energy would improve my confidence, as my self-esteem has been very low, usually a result of how I felt about my body. This was only a short-lived phase.

I understand that some emotional complexities and symptoms can be blurred, and not as black and white when in comes to eating disorders and personality disorders. However, since I have received this diagnosis (only just scoring enough ‘points’ to meet the ‘Borderline’ type – with apparently my most two prevalent being the ‘Avoidant’ and ‘Obsessive Compulsive’) my doubts have continued to grow to a place where it feels wrong. My first doubts came from the placing of my ‘type’ in itself – the ‘avoidant’ part is due to my social anxiety which is all very involved with my eating behaviours, and the ‘obsessive-compulsive’ again is due to both my personality type which again is a trait associated with eating disorders, and is also directly a result of my behaviours around food.

Since the diagnosis, I gave it some time to try and accept but a few months down the line I have come to learn in my heart-of-hearts this isn’t right for me. The eating disorder support, as a result of this new diagnosis has now of course come to an end, which has caused another huge struggle – not just with my eating behaviours, but with the intensity of negative thoughts around my body image, which again leaves me feeling so distressed that I am having to take time out of college, fall behind and also experience more suicidal thoughts. I am trying to embrace the DBT therapy now offered to me which is one morning weekly of group-work, as well as an hour a week with a DBT therapist. Whilst I think this therapy offers fantastic life skills for everyone and I have of course taken some skills on board, I strongly feel that it isn’t specific enough to fit my mental health needs if I want to achieve my life’s potential. I am still struggling hugely now with my body image and how this is affecting my day-to-day life.

Up until the shift in diagnosis, I appreciated the steady, patient pace of the eating disorder outpatient therapy, and as I got to know my therapist well she came to recognise that I was still moving forwards, whilst having the blips. I had the comfort and reassurance of someone with both nutritional guidance, encouragement to get back on track when I was struggling, and someone I couldn’t whole-heartedly confide in about the behaviours I feel so ashamed about. She had the specific, professional knowledge of eating disorders that I need to help me make changes in my life the best that I could. This is where DBT differs greatly to this; whilst the general skills are great, it doesn’t target my specific needs.

I am always aiming for a life that doesn’t involve mental health services, so that I can live with full independence. But if I’m honest, I feel as though I am going to be in them longer due to this new diagnosis, which I feel to be inaccurate and misunderstood, because I won’t be receiving the support I need in order to get where I need to be more effectively.

I understand when you’ve suffered with mental health for so long, particularly as an eating disorder diagnosis, health professionals can misread this as being an unsuitable diagnosis, and that perhaps there’s an alternative one that fits better, because you have tried treatment for long period of time and it hasn’t worked according best to how things read on paper. That doesn’t mean we aren’t moving forward, we just need the patience and persistence of a reliable support team that can meet our needs best. As my symptoms have changed from Anorexia to Bulimia, I feel the latter eating disorder isn’t as understood, because it is less easy to physically measure the results with regards to weight monitoring etc. which is why I feel treatment is majoritively Anorexia-focused. Personally I have found Bulimia to take a much more significant toll on my mental health than the sense of control that Anorexia provides.

I am my own expert, and I hope you will support me in looking into getting a second opinion on this change of diagnosis. Whilst there is the option to get a second opinion locally, I feel like as I have been within the NAViGO services for such a long time now, it would be more accurate to get a fresh perspective from other skilled professionals out of area – that have strong knowledge on both eating disorders and personality disorders in order to differentiate between the two, according to my symptoms and personal struggles.

All I aim for is a better quality of life, as for the reasons explained, especially since the removal of eating disorder treatment, day-to-day life is much more of a battle. I understand you can send an Individual Funding Report to the CCG on my behalf, along with this letter for an independent second opinion. I would appreciate if I could take this avenue with you. Feel free, also, to share any other suggestions about how I can get this second opinion so that I can move forwards with my life.

I look forward to your response on this,

Kind regards,

Yasmin Salt