Beyond Serotonin, I’ll see you there

A picture of a shadowy corn field, surrounded by trees, with the sun low on the horizon

By Heather Cobb, WRAP facilitator and MadCovid member

Last week, a review paper published in the Journal of Molecular Psychiatry suggested that the serotonin theory of depression was ‘wrongly being put forward by some professionals and the public widely believes it.’ Antidepressants became the subject of questions. Initially, there was obvious questions posed in newspapers, in morning chat shows and then a wave of good and bad faith questions from health professionals. Within days the roaring echoes of old debates about whether antidepressants worked had drowned out the fears of those of us who take them. I caught myself being swept away by all those who were ‘just asking questions’ about the efficacy of the psychiatric medications and realised that I was probably just adding to the noise by arguing on Twitter. I might also have been alienating those who have had negative experiences with medication so I want to write about the topic of coming off psychiatric medications here.

People decide to stop taking their medications when they see a Daily Mail article that suggests their meds don’t work. Last week I thought about all the people who will be on the sharp end of discontinuation phases just before a long cold Winter of cost-of-living crisis. I take care not to use my experiences to persuade or dissuade others into making medication decisions. In my view, those critical questioners who suggest that coming off meds is about making pros and cons lists need a reality check. Coming off psychiatric medication is as complicated as starting it.

Winter, 2004. I had no idea that when I told a university health service doctor that I was getting psychically transmitted satanic messages from birds and my face was morphing in mirrors, I was actually beginning a pharmaceutical voyage. I knew that something wasn’t right. I didn’t feel normal. I thought that psychiatric medicine worked the way physical medicine did, I described my symptoms, the doctor ran tests, identified my illness and treated it to remission. The serotonin theory made a bit of sense, but really, nothing about that time made much sense. I didn’t have words like trauma or psychosis to put on my experiences.  The consultants I saw were rude and dismissive. Looking back, my heart aches for how naïve I was, and I have a great deal of sympathy for anyone who asks me to help them navigate those first appointments. There are no satisfyingly neat theories of depression for newcomers to mental health services. At best, you might get ten minutes with a GP who likes you or a leaflet.

Full disclosure, I am an elder millennial, I can remember a pre-2010 austerity NHS. I had a brilliant GP who specialised in mental health. Secondary mental health care was still paternalistic, ill prepared and pathologising. It was average to poor but back then, you got a lot more of that in-person poor care. Quantity over quality. I collected a brownie sash full of different diagnoses because I got to see a lot more psychiatrists. Crisis team psychiatrists, locum psychiatrists, overworked psychiatric nurses, liaison psychiatrists, ward registrars, it was a carousel that many of my peers won’t get to ride on. I was also acutely mad in the years prior to social media, so I had to log onto an American message board called Crazyboards. Crazyboards had sub-forums dedicated to every conceivable kind of psychiatric medication. I had the respective half-life, taper schedules, bang for buck efficacy and sexual side effects of anything I was prescribed at my fingertips. Then I got stuck with an unbearable anti-depressant. I snuck my Mum’s copy of the British National Formulary off her bookshelf to suss out my next move. Yes, we do need to have a constructive conversation about how we empower people who might be given their first prescription the best chance of making an informed decision. I do not recommend filtering your treatment decisions through the lens of strangers on message boards or social media.

My impression of the current landscape is that people aren’t taking as many different psychiatric medications (or having treatment of any kind) because they cannot access anyone to prescribe them. Antidepressants are overprescribed, but that is all many of us are likely to get in primary care. At the same time, user-led communities and groups have sprung up where people can provide each other with the sort of emotional, practical, financial and social support that we used to find in day or community services.

When I crashed out of university in 2005, I went home to Bradford. There Dr Rufus May gained popularity, a coming off medications network was established in Hebden Bridge, a Soteria house was set up. I was too busy trying to regain my independence from an abusive family to get involved in those causes but I watched from the side lines as people supported each other outside the system. It has been my lifelong experience that when no one else is willing to help, mentally unwell or struggling people will help each other. I was lucky to land in the local MIND drop in. The drop in was mostly populated by a raucous and lovable group of characters who had been abandoned by Thatcher’s closures of hospitals and day centres. These were people who’d taken the first-generation medications of the 60s, who had been on Clozapine longer than they could recall. Now they were left to their own devices. Watching Gaz – gap-toothed but sarcastic in the most magnificent way – perform his spoken word poetry about his community psychiatric nurse made me question why I was so happy to trust the consultants that my meds were safe.

I still take Lithium and an antidepressant and I’ll carry on doing so. But my previous reasons for coming off various medications ranged from:

Made me lactate. So sedated I fell down some stairs. Did nothing for me. Switching to a medication that I can’t take with the current one. Gave me a dystonic seizure. So sedated I can’t function at my temp job. Interferes with my birth control. Made me manic.

Coming off medications involved a great deal of planning to the degree that I wish I could list it on my C.V. If you want to hire someone skilled at project planning, hire someone who can run their life whilst tapering off a tricyclic antidepressant that gives them the ‘brain zaps.’ Every attempt to come off my medication felt like pulling the lever to see what state my body and mind would swing into once we couldn’t cut pills into quarters anymore. Coming off medication is so much more than reframing one’s experiences of distress or making a pros and cons list. Coming off psychiatric medication can make or break a person’s life for years to come. Like having a baby, moving countries or getting a face tattoo, everyone has an opinion on whether you ‘should’ take medication but few stick around to witness the fallout of coming off. The recent acknowledgement of epistemic injustice in UK mental health care has given a name to something that I have always felt, that some people’s knowledge is excluded. People’s knowledge about their own medication experiences has been devalued, but so has our knowledge that there is so much we need from the people who conduct this research and write these prescriptions.

There’s so much to be done. I want to see compassionate, person-centred crisis care so that people no longer die in the numbers we are mourning over. I want to have care that means people don’t languish and end up in severe chronic illness that warrants unnecessary or over medication. I want to see a decent tapering program with liquids and tapering strips become available on the NHS. I want to see a move away from tired old psychoeducation groups offered by community mental health teams toward user- and peer-led groups where people can get support in starting and coming off medications. Most CMHT patients will need to do this over their lifetime, why don’t we provide for the best titrating up or tapering down experiences? I’d like an accessible, culturally relevant mental health pharmacist service embedded in communities across the country. I’d like to see parity of health checks for people with ‘serious mental illness’ so that we don’t have to sacrifice our physical health to be compliant. I’d like to see more investment in psychological therapies access, so that people who take pills while they wait for the treatment they really need don’t need to. I’d like to see an end to the grave and systemic human rights violations committed by the Department for Work and Pensions so that many of us who need medication to endure assessments or mitigate the trauma afterwards can have the welfare we are entitled to without having to accept medication to do so.

Out beyond our theories of Serotonin and psychiatric vs anti psychiatric wrongdoing is a field. A bright field untilled, where there is much work to be done to make life better for people who are told that they need psychiatric medication. Communities are already digging in to sustain our numbers this Winter. I’ll see you there.