@lucywriter’s #MadCovidDiaries, 6.7.2020
TW: suicidal ideation, sectioning
At the start of lockdown, I was not in a good place. Following a crisis that involved the police searching for me, I’d narrowly avoided being sectioned and instead was under the care of the local Acute Day Treatment Unit (ADTU).
But on March 18, the ADTU closed its doors due to the pandemic, bringing my treatment to an abrupt end. And a few days later, England went into total lockdown.
As for all of us, it was a total life change that I could never have predicted at the start of 2020. Everything was suddenly turned upside down. My two children began homeschooling, and my husband started working from our kitchen table. My face-to-face visits from my CPN were cancelled, and I couldn’t even see the friends who so often keep me going through periods of acute illness.
Over three months on, as we slowly come out of lockdown, I find myself reflecting on the weeks just past, and I’m surprised at how well I’ve got through them, given where I was at the beginning.
The first couple of weeks were hard. I was still suicidal, but felt trapped, knowing that I couldn’t possibly end my life and leave my husband attempting to work from home while also juggling the care and education of our children.
For his part, he was still afraid to let me out of the house on my own, especially when my daily walks often took me over the M25 bridge from which I’d nearly jumped a few weeks earlier.
I found it hard to answer the phone to my CPN, and when I did, I could tell from the tone of her voice that I was worrying her.
About three weeks in, I was teetering on the brink of crisis again. A late night visit to A&E resulted in stitches and daily welfare calls. The news that social distancing would most likely continue for the rest of the year nearly broke me, and I genuinely didn’t think I was going to get through it.
But since then, things have improved. The medication change that was implemented in ADTU seemed to have kicked in and stabilised me. Yes, I’ve been exasperated, irritable, tearful at times, but I think I’ve coped with lockdown pretty damn well.
I’ve managed 13 weeks overseeing my children’s education from home while also working myself. I’ve found joy in small things like socially distanced walks, paddling in the river with my daughter, and performing a few random acts of kindness.
I’ve also kept on an even keel throughout a run of bad luck encompassing dishwasher, washing machine and hot tub (first world problem) breaking within a matter of days, my husband facing the very real prospect of redundancy, and my daughter developing intense anxiety and insomnia as a result of lockdown.
I reckon I’ve been pretty emotionally strong, actually.
Yet thanks to the Borderline Personality Disorder diagnosis that was slapped on me a couple of years ago, my psychiatrist still insists on calling me emotionally unstable.
I’ve always refuted the BPD/EUPD diagnosis (dx). I firmly believe my previous psych applied it to me working on the (completely inaccurate, and downright lazy) assumption that self-harm = personality disorder, but self-harm is the only one of the diagnostic criteria that I fit.
Along with many, many other psychiatric placements, I’ve suffered iatrogenic harm due to the BPD diagnosis. It reinforced my conviction that there’s something bad, mad, irredeemably awful about my character, the very essence of me. And it’s led to neglectful and downright dangerous treatment by mental health professionals, including being discharged from hospital while I was still planning my suicide.
Since then, I’ve seen two psychiatrists, one private and one in ADTU, who, within the course of a single appointment, agreed with me that I don’t fit the EUPD profile, and have leant towards bipolar 2 instead. But as many of us know, EUPD is a sticky diagnosis.
At the start of the year, when none of us knew what 2020 was about to throw at us, I had a discussion with my current NHS psych about the EUPD label. I explained (very calmly – no tell-tale aggression or anger here) why I didn’t think it fit me, and after a fair bit of toing and froing, he agreed to take it off my records.
What I didn’t realise that he was also going to remove my main diagnosis (severe recurrent depressive disorder) from my notes, leaving me with no official dx, while still referring to ‘emotional instability’ throughout every report, making it a particularly hollow victory.
Due to the pandemic, my latest appointment took place over the phone. While we discussed the incident that led to my trip to A&E, I also told him that my mood was now much more stable, that I was happy with and adhering to my medication regime, and that I’d been engaging with my care coordinator by phone. He seemed pleased to hear it.
We also discussed (again) the fact that I didn’t agree with the EUPD diagnosis, and I confirmed that I didn’t want to be treated according to the PD pathway – something we’d talked about at length before.
But when I received his follow-up letter, it was as if he and I had been at different appointments. He stated that I’d said I’d found lockdown ‘particularly difficult,’ and that I ‘accept the diagnosis of emotional instability.’
I’m so frustrated by the impossibility of shedding the EUPD label, especially as he also says I have capacity and insight into my illness. I’ve coped with lockdown pretty damn well, yet he’s still calling me emotionally unstable.
I’m a socialist in principle and really want to put my faith in the NHS, but I’m having to accept now that if I want to be seen by a psychiatrist who will take the time to get to know me, listen to me, and respect my feelings about the EUPD diagnosis, I have to go private.
When I previously saw a private consultant, he declined to take me on as I’d only just been discharged from hospital, and the private system isn’t set up for crisis care. But now I’m more stable – despite what my current psych says about me being permanently unstable – I’m hoping he’ll be willing to see me.
It feels wrong to have to do this, especially as there are so many people struggling under the weight of an EUPD diagnosis with no option to go private, but I can’t go on banging my head against a brick wall (not literally – not my choice of self-harm!) and being ignored and misrepresented.
If I were genuinely unstable, I don’t think I’d have got through the challenges of the past three and a half months. Homeschooling, working from home and being isolated from friends and family could have tipped me over the edge, not to mention my acute treatment being suddenly curtailed.
But actually, I’ve come through the lockdown in bloody good shape – so could we please stop pathologising me as emotionally unstable? It’s inaccurate, and it hurts.