Late diagnosed AuDHD and burnout in the UK mental health system
41 year old queer person here (he/they).
Back in Feb I was struggling so much with my mental health that I was incapable of doing even basic things, couldn’t do basic work tasks, was in a frozen state most of the time or doomscrolling to avoid the horror of being completely incapacitated, I was waking up feeling more exhausted every day and desperately pushing through each day then each hour then each minute to the point that I couldn’t handle it anymore. I was self medicating with weed as it was the only thing that seemed to pull me out of the frozen state but it was temporary and wasn’t sustainable so went to the GP. I’ve had a prolonged period (around 3 years) of bereavements, close family members with cancer and intense work stress - I felt like I was running on fumes. I’d completely isolated myself and was barely hanging on. The GP prescribed sertraline - was very reluctant to taking it as I haven’t fared well on that kind of medication in the past. The sertraline make me feel like I was on drugs all day every day without the happy feelings and whilst I started to have energy again and the fatigue wasn’t as crippling, I started to spiral because the brain fog hadn’t lifted and I was still unable to function but it felt like my brain now had the energy to worry more about it.
After a crappy and unsupportive interaction with my boss about 2 weeks after starting sertraline, I took time off and started to spiral trying to figure out how to fix myself. I had just been diagnosed with anxiety disorder and was referred for ADHD assessment (felt fairly sure it was there just never got assessed) but the spiral was completely out of control and I didn’t sleep for 4 days. I had what the GP thinks was a sertraline induced manic episode with psychosis. GP was referring me to the crisis team but they wouldn’t touch me because it was “a medication issue” and I got passed between them for days. It felt like my brain completely shut down. Completely dissociated and was awake but not conscious at all. The crisis team finally started taking me seriously and started to come to my home every 2 days and then passed me on to the Community Treatment Team. They have been mostly terrible and not supportive at all. I feel like they’re just biding time until they can say I’m “better”. The month following my “breakdown” I had crazy symptoms: extreme exhaustion, physical heaviness, brain fog, muscle pain/cramps, restless legs, very little broken sleep, identity issues, intense need to fight back, speech issues/stammer, trouble word-finding, returning depression with panic/overwhelm, obsessive rumination loops, hyper-sensitive to sounds/smells/feelings etc, temperature spikes and over-heating in emotional situations, eating/self-care feels impossible, seasickness-like imbalance, memory issues, forgetfulness, slow-thinking, mood up and down like a yoyo and suicidal ideation.
I got my ADHD diagnosis soon after and she said she believes I also have Autism. Always considered myself as having “quirks” but was seen as a fairly high achiever for a lot of my life so never took it further. but during the breakdown/mania my brain felt like the most powerful thing in the world and it was like my whole life opened up in my brain and I could see repeating patterns of behaviour my whole life like moving constantly and never being able to stick a job more than a few years and I was able to pinpoint everything that pointed towards my neurodivergence.
The CTT finally sent me a queer case worker with AuDHD and after seeing me for around a month she suggested that she believes it’s severe Autistic/ADHD burnout and after reading more about it I was overcome with emotion because it finally felt like someone understood what was wrong with me after begging for an explanation for 2 months.
At this point, it’s been 4 months since the breakdown. They’ve given me mirtazapine (I have also been on amitriptyline for years) and I’m waiting on an autism diagnosis. But I’m now suffering with the most severe fatigue of my life. Executive dysfunction is the worst it’s ever been. Self care feels completely impossible. Need daily support. I feel like this is bone deep and it’s going to last forever (logically I know that’s not the case but can’t help be be overtaken by the thought). Struggling with monumental grief that the person I was before feels like they’re long gone and I’m not sure what is left in this shell. I keep getting told to listen to my body and rest but I feel like I’m just rotting away. After 2-3 solid months of mostly being in bed and being unable to initiate basic self care it’s really getting to me. It’s made me feel a lot better to read people’s stories on here and see people have went through similar stuff and come out the other side but ngl it’s been ROUGH and I could do with hearing from people who have faced something similar and are out the other side. Especially those who have been through the NHS MH system. I have historically been a highly sociable, intelligent and high achieving person my whole life and I suddenly feel incapable of the most basic of things.
Sorry to get so HEAVY but I felt like this would be a good place to let it all out because the mental health teams in the UK are not made for ND queer people - that much is plainly clear! Any support or guidance on how to handle this awful part of recovery would be very much appreciated 🫶