2021 PSYCHOSIS: LOCKDOWN, FREEDOM & REVOLUTION
Living with psychosis is about believing in yourself and having faith that the system is there to protect you. Living – more than merely surviving – with serious mental disorders requires specialist support, extensive self-examination and a society fearless of conditions where perspectives, solutions and answers are not by nature simple or clear. Realisations and conclusions for psychosis do exist, they happen all the time on a personal level, and these insights change lives.
Living with schizophrenia, with bipolar, with schizoaffective disorder, with any known or unknown type of psychosis on its own spectrum, is a lifelong challenge. It’s unbearable at times, agonising, often misunderstood, rarely visible, and very difficult to open up about. The current collective understanding of psychosis is in the dark ages. However, through improving mental health teams, alongside global online communities, and with the integral help of trusted loved ones, the mask of psychosis is finally being lifted.
The people who live with psychosis are strong, brave, resilient but mostly hidden; psychosis is our unique, individual condition but our struggle cannot be left as an individual problem. The duty must be on society to not be silent on psychosis: to know, to care and to act. All people with mental health conditions deserve strength not weakness from society in order to develop the self-belief to live.
Aspire is an Early Intervention in Psychosis (EIP) service based in Leeds which helps people aged 14-65 recover from their first experience of psychosis, typically working for three years with each self-described client. I interviewed both staff and client(s) at Aspire to help enlighten others about the progress being made with helping people with psychosis and to reduce mental health stigma.
Angelina* was diagnosed with bipolar disorder after years of worsening mental health 18 months prior to our conversation. She is warm, friendly and cheerful. Immediately she stresses how fundamental sleep was to her downward spiral that led to her psychosis but also her recovery. For over 10 years, Angelina suffered from insomnia, having only two hours of sleep a night which caused her hallucinations, followed by “out of the ordinary behaviour” and then to a “proper breakdown”.
Angelina had an idea for years that she may be bipolar, supported by the fact that over 10 years ago she went to a GP who mentioned the previous label for bipolar “manic depression” to her – though that never led to any formal diagnosis for bipolar. As well as surviving on two hours of sleep a night, Angelina recalls her “way off the scale anxiety” which made her stay up all night worried and have restless sleep. The exhaustion set off the anxiety which then impaired her ability to sleep. A vicious circle that Angelina believes is key to controlling her bipolar.
“I’ve always cared for others because I had to bring up my children on my own basically”
Now in her early fifties, Angelina has suffered from depression since her mid-twenties. Receiving a diagnosis “felt important as I realised why I was doing all these things like spending too much money”. Angelina is also clear about how much the specific help from Aspire helped with her identity. “Since I’ve gotten to know Aspire, I’ve gotten to know myself better, what makes me tick and not.”
Angelina’s psychosis started with unpleasant hallucinations which her GP concluded was due to a lack of sleep. Angelina articulates to me how to her the visions were real. “I thought I was psychic, and I actually felt exhilarated, I felt really good about myself, but I kept talking to people about it all the time. I bet they were getting fed up with me.” Angelina recalls how once her house’s fire alarm spooked her into driving her car barefoot for three miles while believing she was on fire. “Now I can laugh about it, but it’s not funny really.” This terror was just before going to hospital, where she would not stay. The psychosis continued with symptoms and behaviours manifesting such as spelling secret messages with her fingers from conversations with her friends. “Some of the things I can rationalise, some of the things I can’t.” All this led to Angelina being led to hospital again where she was finally assessed by three to four different psychiatrists before being sectioned.
“Last year was a write-off for me, going from bad to worse but the bad thing was I didn’t tell anyone how bad I actually was,” she admits. Angelina’s recovery after being diagnosed was not straightforward. Having “felt great for the first time in ages” from experiencing a sense of stability in hospital, Angelina had what was like another breakdown at home due to her medications becoming ineffective. “At one point I felt I was never going to get better, I had lost hope in finding something to help me. I felt the whole enormity of it.” Trialing different medications meant Angelina still struggled with irregular sleeping patterns – waking up from bed at three in the afternoon but still wanting to go to sleep at 10 at night. This excessive oversleeping affected her quality of life and Angelina was on “too much of a low” from the medication.
Angelina wants to help others with their possible tough journeys with medication and shares how it took her a year of “chopping and changing” to get to an effective combination of a few medications. She experienced many side effects, especially tiredness and sadly “felt hungover all day every day”. Angelina thought she would never find the right medication and feels like she has tolerance issues with some medications, which is why Angelina is sticking with what now works. Angelina takes Bupuepion and Risperidone in the morning, then Mirtazapine at night, which helps with sleep, and also Risperidone again, which also supports sleep. She remembers getting to the stage of despair until slowly turning a corner, finding that balance between bipolar’s lows and highs and not swinging between the two is the goal.
Angelina wants to highlight one of the most common symptoms of hers and many mental health medications: weight gain. She shares how awful it was for her to have gained two and a half stone in only three months from the only medication that had been effective. She has been referred to a consultant, an endocrinologist, by her GP as this could be linked to menopause. She is also being seen to discover why her levels of prolactin are so high, before establishing a weight loss plan with Aspire and her G.P.
“[I was] Not used to having weight”, she says. “I felt caught between the devil and the deep blue sea”.
Angelina is prioritising dealing with the weight gained, instead of going back to other medications and the risk of worsening her depression. Angelina still asserts her right to “let her hair down” once in a while, as that is important, but is also wary of how alcohol keeps her up at night as sleep is a primary trigger for bipolar episodes and psychosis. “If I get a decent night’s sleep, I can cope so much better the next day”.
Angelina, like other people on the psychosis and bipolar spectrum, is on antipsychotic medication which has only ever given her “a brain zap at times” – meaning she knows what to say but can’t get the words out. She has not had to adjust her antipsychotic medication due to communication but it has led to her being withdrawn and subdued, which is unlike her more naturally talkative and happy self. Angelina also distinguishes how she takes a “really low dose” of Risperidone – only half a milligram in the morning and 1 milligram in the night. She chooses to raise awareness in the general public by sharing some of her medication history, a part of her mental health journey. It is imperative to raise psychosis medication awareness within the medical community, particularly for doctors who may not have had much relevant experience and are learning about the medication too.
Post-diagnosis, Angelina is optimistic about her mental health. Her mood, she says, is so much more controlled, and she doesn’t have the same bad anxiety that she used to have. “I’m on a lot of meds, but if that is what it takes to feel better, then so be it.” Angelina further said that she would feel supported to go off her medication if she so desired and is happy with her medication being tweaked. She takes her nightly medication “religiously” at half-eight, so she is settled for an early and proper night’s sleep. Angelina, like many people with bipolar, has blood tests frequently at her GP which crucially detected the physical problem of too much prolactin which led to her lowering her mirtazapine, which likely caused the spike. Angelina highlights how psychosis can be brought on even through menopause which also could have caused the prolactin spike. The relationship between psychosis and menopause exemplifies how significant hormones are to mood disorders.
Angelina has always been very good at hiding her condition, even before being diagnosed. However, she recalls occasions in which she acted uncharacteristically such as an incident where she screamed down the phone to customer service, something she normally detests. She didn’t like herself and used to get “really overwhelmed with things” but was always good at hiding how she felt. With Aspire, Angelina has learned how to talk about things finding that to “bottle-things-up obviously making the bipolar worse”.
A couple of years ago before becoming ill, Angelina was doing really well in herself, notably walking 25 miles a week and eating more healthily. However, at the same time she began to smoke, something she can recognise as a coping mechanism for her poor mental health. This excessive energy is in stark contrast to last year where she even struggled to get into the shower. “I felt like I had gone from being wired and tired, which is a horrible thing, to being really depressed.
“I wasn’t dirty or walking around like a scruff, but everyone that I did felt like a chore. So, jumping in the shower, I was just too depressed to get in, or brushing my teeth on a night – things that I always did before, I wasn’t doing. I was neglecting myself in a lot of ways because of the depression really.” This feeling of additional strain from the depression also manifested itself in Angelina’s family life. She argued that “depression makes you quite selfish, wallowing in your own misery” further explaining the impact from a depressive episode: “I couldn’t deal with my own life, so I couldn’t deal with anyone else’s lives on top of that”. Angelia details how after her breakdown, she had to relearn things such as cooking meals, something she used to love, or even needing a Satnav to feel comfortable driving. This crutch, she claims, is due to a lack of confidence.
“Aspire have been invaluable” Angelina summarises detailing the different areas of support she has. They call her once every two weeks as Angelina finds rationalising things through conversation particularly helpful. Aspire also helps with Angelina’s medication and conducts Cognitive Behavioural Therapy (CBT) with her. Recognising and monitoring moods, questioning the feelings of that day and comparing all this through mood sheets has led Angelina to realise that her moods have been much more stable for a long-time after getting on the right medication post-diagnosis. “I was in the grip of a bad depression, but they’ve helped me get out of that by speaking”. Angelina is completely clear that without Aspire’s support and intervention that she was going downhill.
Angelina’s recovery from her first episode of psychosis coincided with the pandemic’s global mental health crisis with the first lockdown in March 2020 proving extremely difficult. It was hard for her not to see her family or friends – she lives only with her partner – whilst experiencing depression. Angelina comments on how being isolated and feeling lonely made her depression ten times worse, a perennial truth that was made worse with her inability to socialise or access in-person help. “I think when you’ve got depression and you’re not going out that makes your depression even worse”.
One of the caveats with the guidance, rules and legislation during lockdown was that these rules could not be followed due to mental health reasons. However, this advice was very difficult to reconcile with and interpret for people experiencing mental health crises, as Angelina put it: “How can you tell someone with psychosis to stick to all these boundaries and legislations”. The messaging from the government and the power of the media can also be a significant trigger for people who have psychosis and other mental health issues which were agreed by all to be a serious problem, but difficult to solve. “How can you tell someone with psychosis that you can’t visit a loved one, if you are in a psychosis, to you that’s real” asked Angelina, reiterating the urgency and unpredictable nature of psychotic episodes.
Conversely, I also heard from the staff that as Aspires’ clients are quite often used to self-isolating for the mental health in their personal lives, that they were possibly more prepared than the wider public for lockdown. Angelina has not followed the news that much, though one of her children is news-obsessed, as she thinks that those bad stories bring your mental health down. “There is far more good in this world than there is bad” and part of her staying well is putting herself first by being conscious of possible risks like the news.
“I’ve realised that there’s nobody else, people can try and help you, but if you don’t try and help yourself, nothing is going to work”.
Living with psychosis, with bipolar, or any hidden mental illness could be described as living two parallel lives. Angelina has had over 25 different jobs over the years, which she describes as “typical bipolar” and not healthy. Angelina shares how integral disability benefits for her psychosis and bipolar are as a safety net and thanks Aspire for all their support with the difficult process. Angelina knows she is in a better place than she was due to the work she has done on herself with Aspire. She is looking for work after getting to a better state of mental health and on the day of our second meeting, she is off to a job interview.
“Some people don’t understand bipolar, they think you use it as an excuse sometimes and until you have it some people don’t understand how it is to live with it as well”
“The majority of people that are in my life, know that I’ve got bipolar and if I do come across somebody new and I kind of get to know them, then I do say I’ve been diagnosed with bipolar”
Being in hospital for a month, meant Angelina had to tell people she knew quite quickly about her condition. Today, she is better at telling people in her life about her condition than she used to be and informs me how people have been good with her disclosure. She also strongly believes that people who are judgemental, negative, and think you are just unstable from disclosing bipolar are not worth having in your life. The irony, perhaps, of bipolar is telling people you have it after diagnosis when you are in a now much more stable place. Angelina is resolute and grateful about her good support network, her mum and her adult children who came to tea visit every week throughout lockdown. Angelina has been through the wringer and possesses incredible strength and courage, outside of her condition and inseparable to herself. She has survived and now she lives.
I, Séamus O’Hanlon, was diagnosed with bipolar type 1 disorder with psychosis five years ago when I was fifteen. I have chosen to come out of my bipolar closet as I want to help myself and others. My public disclosure is a happy occasion, a culmination perhaps of the last half-decade spent struggling, surviving and also living with bipolar. I consider ‘coming out’ with bipolar a personal choice, something that you might not ever want to do or have no interest in publicly addressing, but a choice that should nonetheless exist.
I truly believe that underneath the episodes, depressions, tragedies, grief, causes, and powerful cycles of bipolar is a battle with confidence, self-acceptance and love. My understanding of bipolar is strong. These past five years have taught me that living with bipolar and psychosis is tremendously difficult but if you can realise and act on changing yourself from a person reliant on external to internal self-esteem, then you have already achieved the most significant step towards recovery.
It didn’t take me long to be diagnosed with bipolar and I would characterise my first manic episode as happening overnight. In the course of one hot August day, I developed mania, transformed into a different person, and was admitted into Children’s Hospital. Assessed and quickly sectioned, my mania deteriorated. I became more ill, psychotic, as symptoms, messages, codes and visions manifested in front of me. It is personal, describing my psychosis, darkly comic upon reflection, crucially hard to remember, but eventually, I woke up, no longer the chosen one, myself again and so grateful for it. I was diagnosed in the middle of my section, after my acute manic episode, broadly agreeing with the list of characteristics.
I found my own footing in the mental health facility. Traumatised and essentially in denial, my mental health improved, and I left my section early to go back to school. The first choice I pushed for with my condition and not the last. A few months later, after a very difficult winter term, I, with the firm backing of my parents, transitioned to Lithium – the right medication which enabled my freedom.
For the first two years post-diagnosis, the service I received was mixed, patchwork and less than expected. I waited 10 months for CBT therapy, secondary school and taking my GCSEs in the interim, whilst irregularly attending what I would describe bluntly as a ‘step on a scale’ service. I did receive empathy and care from staff, but overall, my experience, to begin with, was adolescent services without any bipolar or psychosis expertise.
Weigh-ins, medication reviews, blood monitoring are all useful tools, but I felt like my weight was designed to matter more than my moods because as a quantifiable metric, it could be more easily critiqued. I managed to keep my head up high and found body positivity very slowly through the years, myself always critical, sometimes only at myself, but then at society. Walking, discovering, thinking for myself, swimming, enjoying wonderful food, I understand how important physical health is to my condition. The turning point was, and still is, thinking past bodily validation from others to make body confidence a part of internal self-esteem. Hating your body accelerates mental illness. Loving the body liberates the mind.
During the summer after secondary school, I went to C.B.T which propelled me on as I was given a new positive and vastly improved outlook on the world, meaning I was in a better position to continue on with my life. Navigating a normal sixth-form teenage life, motivated despite ‘everything’. I was never ready for my second manic episode. It came, medication worked and then it didn’t, the mania and psychosis came back again. Then I started again. At the same time, I transitioned as planned, to adult EIP services. My whole treatment changed for the better, and I examined my condition in more depth. For the first time, I comprehended how I was on both the psychosis and bipolar spectrum, and it was abundantly clear that I would be so for life. With the complete support and fighting spirit of my parents, I had contentiously avoided sectioning, meaning that my recovery, though extremely challenging, was an improvement.
I want to talk about antipsychotics symptoms because I believe people should have informed choices based on first-hand experiences as part of medical knowledge. Risperidone helped me go back to school, take teacher assessments of my own choosing, go to a Britney Spears concert with my best friend, turn seventeen, and got into Year 13. It bought me time. I did struggle with numerous side effects – one, in particular, I want to raise awareness about was the struggle to read, write, speak and do any type of work. Part of this was my medication being far too high, stiffness, partly it was the aftermath of the strain caused by the mania, and part of this was the lack of rest. I want to be clear that healing comes from rest, that rest must be generous, and that society needs to facilitate this.
I do think there is a stigma that comes from being sectioned, from disclosing you have bipolar and from the very concept of psychosis itself. I don’t think I am wrong or the problem anymore. It’s my mental health and my life. I went off my antipsychotic medication, went to therapy for a longer amount of time, completed my A-Levels, and had a third manic episode a week later. However, though it was still difficult, I got onto the right medication intervention immediately, Risperidone, and was able to carry on. Writing, editing and submitting the philosophically dense essay that got me into university with a reduced offer. Three years, three episodes and a choice to live life again: leaving behind my bipolar teens.
What I like most about Aspire’s service is that they fit around my schedule and made me feel good. I believe I would have benefited a lot from increased awareness that bipolar and psychosis even exist. What I want all to know is that mental health conditions can manifest at many different ages and that you are succeeding with these conditions if you are still alive for tomorrow. I am most recently proud of getting through lockdown, getting through continually exhausting depressive episodes and recently completing my time with adult services. I’ve been around the bipolar block.
People living with psychosis, bipolar, schizophrenia, personality disorders, severe and enduring mental health issues, and all people who are struggling in this world with their mental health have breakthroughs every day. Classifications change, medications are tweaked, the clarity of mind is lost but then it can be found again and again. The pendulum swings. Throughout the world, there are unimaginable psychoses but there are living realities who by longing for freedom, inspire change and find themselves rooted.
This is the ongoing mental health revolution.