Coming off lithium ‘lifted the veil’ of tranquillising medication for a more fulfilling life

A personal story from John Kelly

You have bipolar disorder? No need to be so bloody sheepish about it!’ Insisted Mattias bullishly, on hearing why I had an appointment that required me to take time off from work that day in Tamano, the Joinery shop that I had only recently began working in as a senior apprentice. 

‘That’s nothing to be ashamed of,’ my old carpentry boss continued, ‘sure it’s as common as having the bloody cold here in Sweden, sure Massa there has been a manic depressive for years now!’ Mattias gestured towards his business partner and fellow master craftsman.  Massa gave an acknowledging smile in response, shrugging his shoulders with ease to confirm what has just been said.  Mattias, rounded his point off by saying ‘and so did my father by the way.  Truth be told, I’m probably a bit that way myself.’  

This unexpected acceptance of my ‘condition’ from my new employers stayed with me as I travelled by foot, train and then foot again towards the psychiatric centre.  I walked through the door and proceeded up to the counter to give the male receptionist my name, date of birth, address, Swedish social security card, Irish passport, prescription and accompanying letter from my consultant psychiatrist back in Dublin.  Living in Stockholm three months now, my extended script had just run out.  

Nerves kicked in as I handed over this information.  It was the first time I would go anywhere other than the local mental health clinic back in Dublin to collect my prescription, since being diagnosed eight years previous.  The receptionist took his time inputting my information onto the desktop computer between us.  His typing rhythm interrupted only when reading through my prescription, ‘1200 mg of Lithium Carbonate per day?’ He asked.  ‘Yes,’ I said, ‘Is everything OK?  He just nodded and kept typing. 

I don’t remember waiting all that long before I was ushered into see a clinical psychologist.  My prescription was ready and waiting on the desk in front of him.  After some short pleasantries about my time in Stockholm, he took a moment to look at the bulky bag of blister packed tablets.  ‘I want to tell you that we would never prescribe this amount of Lithium Carbonate to anyone, as it is toxic for the system.’  He said this matter of factly, in typically Swedish fashion.  ‘And I am sorry to have kept you waiting but we contacted your clinic in Ireland to double check things and your prescription checks out.  So, here you are.  However, rather than give you a two-month supply, there is enough here for one.’  Please come back to see me in one month’s time, I would like to see how you are getting on before giving you more.’

I left the clinic gobsmacked.  I was trying to digest the fact that a clinician had openly told me that I was being given a toxic amount of drugs to take, trying to get my head around how one jurisdiction can prescribe a dosage claiming it to be safe when another has no problem stating it’s a toxic dose and that they would never normally prescribe it.  Toxic in what ways exactly, I wasn’t altogether sure, though I had some idea given my experiences having taken this dosage for nearly a decade at that stage. 

About six months before moving to Sweden in January 2007, along with regularly attending the local clinic to get my prescription, I had begun meeting regularly with an alternative psychiatrist called Michael Corry.  Following a chance meeting, we were exploring the possibility of me coming off medication.  My motivation?  Though I wasn’t staying in acute wards all that regularly, I felt my cognitive ability had dulled over the years and that life was completely on hold before meeting Michael and asking if he could help. ‘Not everyone can do it,’ Dr Corry would remind me regularly at the start of our sessions, before reassuringly affirming ‘but I think you can.’  

Any notion of coming off meds was put firmly on hold when the opportunity to move abroad came up suddenly.  I was very aware that each of the three times I ended up in acute psychiatric wards, these stays followed elated states I experienced while abroad.  So, I was intent on not putting my family through that again when going away this time.  Going to Stockholm was for me at this time, a chance to make a go of things again in a new place where very few knew me, the city represented a place where I felt I could relearn how to stand on my own two feet again.  I decided before buying my ticket to Stockholm that I would stick with the stability that my prescription seemed to offer for the time being at least.   

Walking from the clinic back towards the train station, thoughts about the ‘toxic’ prescription in my coat pocket weighed heavily.  The sense of stability I thought medication provided me with evaporated, replaced instead with an uneasy realisation that I had been overmedicated for years, tranquilised for want of a better term.  I knew there and then that I had a decision to make.  

Coming off Lithium so far from home would be risky but I also knew that I was in a good place, literally and metaphorically. I felt grounded, thanks in large part to the sessions with Michael.  I was working in a place I loved, with people who encouraged me to learn a trade that I struggled with badly before meeting them.  I lived on my own again for the first time in years, in a city that felt like a gently unfolding adventure.   This was clearly a time for me to grow, the conditions were perfect and the idea of being over medicated didn’t seem to fit.  I didn’t have to think long or hard about it, it felt like the decision was made for me, I discontinued the dosage that day.  

Within four weeks of that decision, on a bright April afternoon, I had the waking sensation of a veil lifting.  I was working from drawings to build a custom-made wardrobe.  Rather than having to go over the maths countless times and still make mistakes while cutting the wood panelling out, I got it all in one.  All of a sudden from that moment, I could figure all the calculations and machine settings accurately with a sharpness I forgot that I had.  

Over the next few short months, while working in that Joinery workshop my cognitive ability to do carpentry took huge strides.  Day by day and week by week my confidence grew as my upskilled.  When my dad came to visit me that summer he wondered aloud while being shown around an apartment that I had just fitted out ‘What did I do wrong?’  A fair enough question, as I couldn’t move beyond even the most basic tasks under his tutelage as an apprentice over the course of four years before moving to Stockholm. ‘It wasn’t your fault da’ I assured him, and it really wasn’t, it turned out a lot of what he taught me was finding its way now.

Some things stick in my memory very clearly and I experienced two things very strongly that day fifteen years ago, when I was handed my last prescription of psychiatric medication.  One was the sense of genuine acceptance from my old bosses and with that the realisation of just how important a supporting and socially accepting environment is for anyone struggling with mental health issues.  Secondly, I was struck with a sudden and very real determination.  This determination came from knowing that by deciding to come off medication I was also embarking on a journey of healing and discovery that would last a lifetime, a journey that was now in my hands so taking full responsibility for myself became key in that instant.  These realisations soon led me to a career change in which I have been privileged to use my lived experience to support others in the hope of bringing about positive change.  

Over the past 12 years my lived experience has informed my work as a community worker in the areas of mental health and disability.  I, like many peers working throughout Ireland now, come to this work with an insight and empathy that only comes with having had that unique lived experience During this time, I have had lots of people telling me that they wanted to come off medication and I know plenty of others that have tried.  

Aware of the risks involved with tapering off medication and the support needed to do so safely, I have never been in a position to encourage anyone else to try it.  The current system in Ireland does not support it, as far as I am aware. Those I know who tried coming off medication did so, as did I, without the support of their mental health teams.  So, not only did we run the gauntlet of potential health risks involved but also the likelihood of being labled ‘non-compliant’ and with that the chance of being discharged from the only care publicly available.  

By getting to work in closely for a time with a psychiatrist like Michael Corry, I was lucky to have had the support of a doctor who believed treating distress as purely a medical problem was fundamentally wrong.  Michael had the insight, experience and empathy necessary to help me navigate my way off meds safely.  RIP Michael, I am eternally grateful for your help getting me started on a journey I still travel. 

I appreciate and respect fully that for many medication plays a key role to supporting their mental health. Paradoxically, I am also aware that the over-reliance on pharmacology within mainstream mental health systems is now internationally recognised.  Going from my own experience and knowing the experience of others, I believe that as the Irish mental health system looks to evolve supporting people’s choice around alternative or supplementary therapies are key, including the availability of information and support around tapering off medications safely, for those looking to explore the option.  

Fifteen years after that sole year spent in Stockholm, I have moved on in many ways.  I am back in Ireland now, a father, a partner, a Community Worker passionate about personal, social and systemic change and I am still a woodworker in my spare time.    Though I have long since left my diagnosis behind me, I am proud to consider myself a peer working in mental health.  Questions about over medicalisation and the effects of such practices pervade unanswered to this day.