In Blissful Ignorance 🌥

People are so unaware and uneducated about the reality of mental health care. Truth is mental health care is either non-existent or further damaging/traumatic. People living with mental illness are ignored, shamed, and many of us have been suffering for years. Having a chronic mental illness and/or being neurodivergent makes the pain even worse. We are not believed. Our lived experiences are dismissed. People tell us to talk, we do but no-one is listening. People tell us to reach out and ask for ‘help’, we do but ‘help’ doesn’t exist. We are unwell and ‘self care’ is not enough. We need to move past superficial words/phrases. Listen to those with lived experience and educate yourself, please.

The first time I approached a GP about my mental health was 7 years ago. I was hopeful but as the years went on this hope reduced and as of present I have none left. Not to discount the many charities that offer mental health support (they do important work) sadly it’s often not enough for those with chronic mental illness and complex issues. We often require long-term support and specialist treatment. I am fuming at the state of mental health services in the UK. Disgraceful and unconscionable.

I have given up and I promise you it’s not without reason. I need help but it doesn’t exist [for me] and if you think I’m overreacting please read this entire post before making any judgments. This is my truth, my experience of mental health care, it’s real and it’s disturbing.

Note: I’d feel good if I could name and shame but I can’t take that chance (for now at least). It’s also crucial to mention that I have a diagnosis of EUPD (emotionally unstable personality disorder or borderline personality disorder) which is heavily stigmatised. To the extent that “in 2003 the National Institute for Mental Health England published the landmark document Personality Disorder: no longer a diagnosis of exclusion. The document recognised the systemic failings of statutory services to meet the needs of those given a diagnosis of personality disorder.” Despite this we continue to be excluded.

When I spoke about feeling depressed my GP said I needed to “think positive” and “focus on the things going well”. At first I thought he’s right, I was at university doing well. I soon graduated, started a job and further studies, but I was still miserable. Actually it was worse because although I continued to do well in my job and studies there was a lack of motivation, I had no energy, I was unhappy. My GP repeated “you’re doing so well focus on that”. The point was that I couldn’t because of how depressed I was, he didn’t seem to understand. He suggested I contact IAPT services for talking therapy but my issues were too complex.

I was then assessed for secondary mental health services. Instead of receiving further help for my depression and anxiety, I was sent for eating disorder treatment. Food is difficult and I am underweight but considering my mood has a huge impact on my eating this was the wrong approach. The ED service was horror. The threats of getting my family involved when I didn’t want to were so routine I was scared to attend my appointments. It was very unpleasant so I had to discharge myself.

The CMHT (community mental health team) offered no support except seeing a psychiatrist every 6 months who mostly just changed or increased my medication. During all of this I have self harmed and attempted suicide but it was seen as ‘not serious enough’. I tried counselling offered by a local charity but after 3 months I stopped, it wasn’t helping. My mental health was getting worse. I noticed struggling with work and studies but I never let it reflect on my productivity/results. No-one suspected a thing. And then I crashed from what I now know to be burnout.

My treatment and access to mental health services drastically changed from hereon. Life was put on hold whilst I was in hospital. At that point I had a bit of hope about things changing for the better (how naïve) except it was about to get much worse. I wasn’t seen by a doctor/consultant until the third day, no information about my rights was given or explained (only after asking multiple times), and my medication was changed without my knowledge. I requested help getting an advocate which was ignored until I spoke to a specific nurse who sorted it within hours. I was told by the doctor: “if you really wanted to end your life, you would be dead, not here”. They really didn’t care, it was obvious.

A liar. I was accused of lying without the doctor directly saying it. Post discharge I was moved under the care of the CMHT where I once again had no support except seeing a psychiatrist. I did receive 6 sessions of MBT which was useful in that transition from hospital and the therapist was good too. It’s that kind of support I need long-term but I don’t think it’s possible. Private is unaffordable. I visited the hospital a couple of times post discharge to see patients and particular staff. I was invited by them to the ward Christmas party but the doctor didn’t know. She asked me in a displeasing tone “I’m surprised to see you here”. This doctor then said something which I don’t think any professional should say to a patient, and which made it very clear what she thought of me.

I feel sorry for you. I feel so sorry for the way you think.”

That hurt. A few days prior I received copies of some of the medical notes I had requested but I didn’t get around to reading them. Her comment hit so hard as soon as I got home I started going through my notes. The sad part is I wasn’t even shocked. Manipulative. Attention-seeking. Dramatic. I was not the liar, the doctors were. Not manipulative, I needed and was asking for help that I deserve. Not attention-seeking, rather support-seeking. Dramatic? No. I was angry and rightfully so. This was all a part of the huge stigma and negative stereotypes around the diagnosis of EUPD (emotionally unstable personality disorder), a diagnosis that was on my record since 2015 yet I was unaware.

Some of the duty workers at the CMHT were helpful and until COVID hit I would often go there to speak to someone. It was one of them who noted I needed a support worker and arranged for one to be assigned in quick time. After everything that had happened up to this point I still hoped having a support worker would be helpful. Spoiler alert: it got worse. I was assigned a care coordinator along with a support worker (these are two separate roles right?). The first few months in I realised we were having the same conversations each time, I was repeating myself and they were repeating the same ‘advice’. Just because I was able to speak and dress well it meant [to them] I didn’t need help.

Are these mental health ‘professionals’? I have my doubts. They were not understanding so I thought I’d write it down in an email but they didn’t read it. I specifically mentioned reading everything in the email and taking the time they need to respond. When I questioned why they didn’t read it the care coordinator said “you don’t expect us to read everything do you”. Well, yes, I do. It’s part of what you’re paid to do. The support worker got defensive, unable to take on feedback/constructive criticism, and just exited himself out of the situation. Literally. Never heard a word from him since. The care coordinator on the other hand asked me to choose a specific issue I needed help with, ‘one thing’. Her role means coordinating the different aspects of my care. It doesn’t make sense.

One at a time I thought, if I could get help with even one thing at that point it was a lot so I said okay. I need help with housing. Since then she only got in touch about 5 times, briefly asking how I am (no mention of housing) and once to cancel an in-person meeting less than 24 hours to go. Tired. I was giving up the little hope left. January 2021 the manager of the CMHT and I had a meeting to discuss my concerns. He seemed to understand and said he’d speak to my care coordinator and support worker. He never did. My emails were ignored, phone calls unanswered. Well, time for an official complaint. Sent through and acknowledged in the same month. Surprise surprise, no response since. One email was answered saying I’d hear something soon. One call citing delays due to ‘COVID’. It’s been THREE MONTHS and I have ZERO updates. Zilch.

And that actually goes against their own complaints policy. I don’t think I will ever get the help and support I need. If that’s not enough and you want to signpost me to mental health hotlines and charities, please don’t. Charities are good but do not have resources to provide substantial support for complex needs. I’ve used hotlines in the past Samaritans in particular but never again. Crisis line (at least the one I’m under) say things like, “have you tried taking a shower”, “watch your favourite TV show”, “make yourself a cup of tea”, “go for a walk”. Ouch! Totally cured my suicidal thoughts and mental illnesses (NOT). My last contact with Samaritans I was told (can’t remember word for word):

It seems you are very certain in your words and made your plans. We support you in your decision to end your life.

Thanks, Samaritans! This post has taken so much energy to write, this isn’t even half of the harm I’ve experienced from mental health services. Don’t tell me to reach out and ask for help. Don’t tell me to call a hotline. Don’t tell me to take a walk. Definitely do not tell me things will get better. I remained hopeful in the darkest and hardest of circumstances. I did everything people said and suggested. Where am I now? No IRL (in real life) friends, no mental health support, nothing. If this is to be my life please take it away.

Sahil ⚡

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