The power of story telling: A blog for Time to Change on NHS Change Day

I’m interrupting the promised flow of my recovery story to write a piece for a really important campaign. It’s being led by Lisa Rodrigues, a former chief executive within the NHS, and it’s all about challenging the mental health stigma that still exists within our health service. Lisa talks here about her own experiences, and how we know that there is still more work to do on this stigma: http://changeday.nhs.uk/story25 One element of the campaign encourages NHS staff who have experienced mental illness to speak about their own experiences, as Lisa has done, to reduce the sense of “them” and “us”. This is something that I’ve recently done myself, and I know how daunting it can be to take that risk of removing the professional mask and exposing your personal struggles. However I’ve found it a really cathartic and enlightening experience, and I hope that many other NHS staff will find the courage and the support they need to empower them to talk about their own experiences.

As I’ve mentioned in my other blog posts, as well as being a survivor of postpartum psychosis I work in mental health services within the NHS. Before, during and since my episodes of mental illness I’ve held positions of responsibility and leadership, both within my original profession of occupational therapy, and now as a programme manager within a transformation team. In the 11 years since I was first unwell I haven’t set out to hide my illness from colleagues, but I’ve only mentioned it when it seemed to be relevant to do so. This was often as an example of how recovery is possible, or to enlighten colleagues about how a “real patient” can feel about things. On these occasions I’ve observed the surprise of colleagues when I’ve first mentioned that I’ve recovered from a psychotic illness. Although they tried to hide their shock I’ve noticed that learning this new information about me often appeared to confuse them, as it challenged their “them” and “us” notions of staff being somehow different to patients.  I don’t think badly of those colleagues for their reaction, as I know I’d have very likely reacted the same in my own past, when I was a mental health professional yet to have my own “lived experience.” For many who have worked in mental health services for a good few years the realisation that people who have suffered a mental illness can achieve career success, raise a family, and live happy fulfilled lives remains relatively new. I think my experiences reminded colleagues of that in a very poignant way, and  I hope it reminded them to always give hope of recovery to their patients. For those colleagues in more corporate NHS positions, without a clinical background in mental health, I think my occasional revelations challenged misconceptions and stigma in an even more fundamental way, leading to some positive changes in language and attitude, all small but meaningful steps on the journey toward culture change.

Last year, partly due to reading Lisa Rodrigues’ inspiring story of talking about her own experiences when in a very senior NHS role, I decided to “come out” at work more widely. I was lucky enough to get great support from colleagues in the communications team of my trust, who listened to my story, wrote it up in journalistic style and allowed me to launch it via a guest editor slot on the weekly all staff email. Was I nervous about it and was it traumatic to relive things? Oh yes, I did experience anxiety during the process, and I cried about some of the painful memories that were evoked by re-telling and then reading my own story. But it was a case of “feel the fear and do it anyway” because I’d made a definitive decision that the story had to be told, and that I was at the right stage of my own recovery to be truly open. The reactions I got to telling  the story reinforced that I’d made the right decision. One group, mainly psychiatrists and other clinical staff, thanked me for being brave enough to tell the story, and promised to discuss it in their teams and share it with patients to give them hope. A second type of reaction was along the lines of “wow, you’re so brave to tell your story …I’ve had mental illness too but I’d never tell anybody here, especially my manager…” The perception of “bravery” in telling my story, and others’ fear of telling their own, really reinforced the importance of challenging mental health stigma. I hope that one day, in the not too distant future, sharing experiences of mental ill health won’t be seen as a risky thing to do, bearing potentially negative consequences to one’s career, reputation or social status. That brings me on to the third type of reactions, whereby some colleagues clearly felt very uncomfortable with me telling my story. They didn’t openly say so of course, that would have been very obviously inappropriate and indefensible within the context of our organisation. However the difference between those who were genuinely inspired and supportive, and those who just said positive things because they ought to, was obvious in subtle ways. Perhaps sometime I’ll take the opportunity to discuss the story more with those people and understand their reactions. For now I’m assuming it was a mixture of feeling sorry for me for making revelations that they considered career limiting, suspicion that I’d told my story to excuse myself for any mistakes I made at work, or just that they felt uncomfortable with somebody being so personally open within a professional setting.

I continue to be relieved and proud that I’ve told my story. I’m relieved because I feel I can now always be truly authentic in my interactions at work, openly demonstrating my passion and values to improve mental health services and challenge stigma. Telling the story has lifted the feelings of shame and inadequacy that sometimes drove me to work in ways that didn’t really resonate with that. And I’m proud that in my own small way I’ve made a difference, including starting some conversations in my own organisation about stigma and about how we can support more staff to tell their own stories to make an even bigger difference.

Further to that, as you can see on this website, my experience of telling my story at work spurred me on to start a blog and write my story in my own words, to challenge stigma on a bigger scale and to reach out with hope to other women suffering the illness that I had. It wasn’t something I’d planned or anticipated when I told the story at work, but it’s moved me even further along the road of recovery and helped me, via twitter, to meet some truly inspirational people who are all telling their own stories to tackle stigma and support others.

So, if you’re an NHS staff member with your own mental health experience please do have a think about whether it might be the right time for you too to tell your own story, even if it’s just to one trusted colleague. There are some resources here that might help you to start that conversation: http://www.time-to-change.org.uk/talk-about-mental-health/telling-someone-about-your-mental-health-problem. And if you’re an NHS employer, please consider setting up some support within your organisation to help your staff feel safe to tell their stories, because open fear-free conversations can make a huge difference.

Advertisement

Postpartum Psychosis – the long and winding road to recovery

It’s taken me a while to get onto writing this second post about my ongoing journey through postpartum psychosis. I think that’s partly because the recovery phase was the most painful for me. In those early weeks my uncontrollable emotions were projected outwards as mania, which was highly alarming to those around me but relatively joyful for me as I lost my grip on reality, worried about nothing and believed lots of exciting things were possible. The following months were the polar opposite, as once the medication had brought me down from the high my thoughts and emotions became increasingly inward facing and desperately negative. I lost myself in feelings of shame about how I’d failed my baby and my family, guilt about getting us into debt and a sense of hopelessness that I’d ever be able to regain a normal life, return to my career and be a good mum. Most of all I internalized the full impact of the stigma of being diagnosed with a mental illness, which had a hugely detrimental impact on my recovery because it stopped me being honest with myself and others about my continuing distress. The course of events is a blurry memory now, but I’ll attempt to describe some of what happened.

The sedating medication I was initially prescribed did make me sleep, almost solidly for 3 days in fact. No consideration had been given to breastfeeding, so I had to abruptly give that up once I took my first dose. That may have been the right decision given the state I was in, but I’ve since learnt that stopping breastfeeding abruptly can be detrimental to mental health. Anyway, I continued to take medication for 4 weeks, which gradually calmed the mania. During this period I had frequent visits from midwives, health visitors and mental health professionals. My husband had to take time off work as I wasn’t allowed to be alone with my baby, and friends and family rallied around to help. That is, those we chose to be honest with helped, but we hid the reality from many others. I can’t really understand now why we did that, but I suspect that stigma played a big part. In those early weeks there were some discussions about admitting me to a mother and baby unit (MBU), but we didn’t take that option, partly because it was too far away for my husband to visit easily, and also because the idea terrified me. What was I afraid of? Yet again, I think it was primarily the stigma. Looking back now I sometimes regret not taking up the MBU bed as I can see that intensive specialist support may have enabled a more complete recovery and better bonding with my baby, and I think it would have been really helpful to meet other women in the same situation.

Instead of being admitted I stayed home with a desperate desire to put it all behind me as soon as possible, go back to “normal” and cope like other mums did. The medication I was on prevented me from waking for night feeds, so when I was recovered enough for my husband to return to work I weaned myself off it, so I could take full responsibility for my baby. Within 2 months I managed to convince myself and my care team that I was well and I got myself discharged from their care. It was such a relief to believe I’d recovered, and that I no longer wore that label of having a mental illness. Retrospectively I want to slap myself for letting internalised stigma prevent me from seeking, and holding on to, as much specialist support I could, and for not being honest about the anxiety and depression symptoms I was now experiencing. I truly hope that the societal shifts we now see with the anti stigma work of Time to Change and others will, over time, lead to more people being more honest about how they are really feeling. Oh, and by the way, I absolutely do not recommend stopping medication without medical advice and supervision. It was very foolish, and could have had terrible consequences.

Instead of being honest I tried to ignore and hide my continued unease, and carry on with the daily activities of caring for a baby. I coped reasonably well despite the distressing and negative thoughts that were invading my mind, and I was able to join a postnatal group set up by local health visitors for new mums. I count myself extremely lucky for that, as that group of mums have become lifelong friends, and our growing families have shared memorable times together for over 10 years now, starting as weekly meet ups, and developing into regular outings, camping trips and many a boozy girls night. It’s hard to imagine now that it took me 6 months to tell those lovely ladies that I was “different” as I was suffering from postnatal mental illness. They probably still don’t realise that our early times together were often painful for me as I felt so ashamed and inadequate, whilst they all seemed to be coping like  “proper” mums should. I believe that if those early group sessions with the health visitors had included information about postnatal mental health issues it would have been easier to be honest with those other mums, and to ask for the type of support and reassurance I really needed.

Eventually, after a few months of outwardly coping but being in secret emotional turmoil I could no longer contain it, and I broke down in tears during what was supposed to be a fun cinema outing with my husband. I finally admitted that I wasn’t really coping and needed more help, and I went back under the care of the community mental health team, on a new medication regime and having regular visits. The medication took many weeks to properly lift my mood, so I continued to experience very negative thoughts and to worry constantly. Some of those thoughts are too painful to share, but I’ll just say that I sit here today greatly relieved that I didn’t act on them. I didn’t always find the support from well meaning professionals helpful, as I wasn’t given hope that I could fully recover, and the underlying issues weren’t really addressed. Thankfully in the ten years since then mental health services have become much better at focusing on recovery and instilling hope.

What undoubtedly helped me hugely during that period was when I finally got to see a specialist perinatal mental health team, who explained my diagnosis and told me that most women with postpartum psychosis do fully recover, learn to love being a mum, and regain fulfilling lives.  And over time my own experience has showed that to be true. There were certainly many emotional struggles for many more months, and it’s taken many years to let go of the guilt and shame, and to feel like a “good enough” mum, but I was able to start a gradual return to work when my baby was 9 months old, and I’ve successfully continued to develop my career in mental health, juggling that with the joy of bringing up my incredible little boy.

And here’s the other great thing – I went on to have a beautiful daughter too! In my next blog I’ll talk about how the perinatal mental health team supported me to enable that to happen, despite the fact that there is a 50:50 chance of postpartum psychosis recurring in women who have had it before. For more information about the disorder you can visit the action on postpartum psychosis website here: http://www.app-network.org/

Manic Mummy – my descent into postpartum psychosis

So, why am I here writing my first ever blog post? The crux of it is that 10 years ago I suffered from postpartum psychosis, then 6 years ago I suffered from postnatal depression, and until recently I haven’t shared my experiences as widely and honestly as I could have done. Sure, I’ve sometimes spoken about it to certain friends and family who have a good understanding of such things, but I’ve totally avoided the topic with many others. I occasionally tell my story at training days for professionals, but mostly in my day-to-day home and work life I’ve buried that part of my history, and tried to move on in a kind of semi-denial that it really happened to me. It’s mainly been a self stigmatization thing. The article here explains that phenomenon in a better way than I can: http://goo.gl/TWREyQ It’s also decidedly painful, and sometimes embarassing, to relive some parts of my experience, and I haven’t always felt strong enough to face it. But a few months ago, due to some reactions I got when I told my story, I felt compelled to do it more. I hope that by being open and honest I can contribute to tackling stigma, improving understanding, and offering hope to others. More selfishly I’ve also finally realised that facing the memories and truths that I’ve avoided hold the key to me regaining a fully intact self esteem, and saying a final goodbye to the guilt, shame and self blame that still impact on me. In early 2004 I was a happy expectant mother, looking forward to having a paid 6 months off my career to look after my first baby. Oh how naive I was, as I joyfully engaged in baby showers, and read all the books and magazines about how wonderful new motherhood would be for me! I’d followed all the guidance on how to prepare, and through my rose tinted spectacles I imagined I’d cope just fine because I’d planned for baby’s arrival with great precision – an approach that had pulled me pretty successfully through most of life’s challenges up until then. But the moment my baby boy was born my dreams of how it would be came crashing down. In fact, it started during the birth itself. Whilst I didn’t suffer what would be called a traumatic or medically risky labour I felt totally horrified and overwhelmed by the pain, the indignity and the lack of control I felt over my body. When the worst of that was over and my baby was handed to me I didn’t experience the rush of love I was expecting, I just felt panic that despite my tiredness, my pain and the gorey mess all around me I still had to take responsibility for this tiny pink creature. At that moment I just wanted him taken away for a while, so I could rest until I felt more ready to cope. But I knew that wasn’t what I ought to say, I knew that skin to skin contact and early breastfeeding were really important, and I wanted to get my dream back on track, so I held him and tried to do what the books had recommended. That was huge disappointment number two – he couldn’t feed and I really resented myself for that perceived failure to get him off to the best start. Thus followed an exhausting 3 days and nights in a maternity ward, trying repeatedly to get him to breastfeed with very little support from the staff. As for sleep, it totally eluded me that first night after I’d arrived on the ward at 2am, and with the hustle of the daily ward routines and trying to feed during the night there was little opportunity to properly rest as the days went on. I’d never been so exhausted in my life, I was feeling increasingly emotional and desperately craved sleep. I desperately wanted to get home to my own bed, but they wouldn’t let me go until feeding was established. Ultimately I got myself discharged by saying I’d bottle feed instead, but I was secretly determined to carry on trying to breastfeed as soon as I got home, because I was not prepared to accept failing at that, and because despite not having an intense emotional bond I still felt protective towards my son, and responsible for his future health. I don’t know at which point I started to go mad. Maybe it was in the hospital when I had a shower and I was so convinced I heard my baby crying that I opened the door and checked 3 times, only to find him lying fast asleep? Was that an auditory hallucination or just tiredness combined with parental protectiveness? Was my inability to sleep in the hospital a cause or a symptom of the upcoming mania which I would experience? And when we welcomed far too may visitors into our home in the early days did the continuing lack of rest send me manic, or was I inviting them all because I was already losing a grip on what my priorities should have been? What I do know is that during the first 2 or 3 weeks of my son’s life my emotions and behavior became increasingly unlike my usual self, and my family and friends got more and more worried about me. At first I was concerned myself, mainly about tiredness. I desperately craved sleep, and I was tearful and panicky every time sleep eluded me, due to either my increasingly active mind, or to feeding issues (I was still trying to breastfeed, with very little improvement and a very hungry baby.) Then came the hallucinations where I would see my baby’s head on my husband and on passers by, in place of their own faces. These bizarre experiences distressed and confused me but I assumed them to be products of sleep deprivation combined with normal motherly obsessions with her own baby, so I didn’t  mention them to anybody. At some point I stopped being worried about lack of sleep, I was in such a manic state that all I experienced was unadulterated happiness. I believed that people who were concerned about me just couldn’t recognise that becoming a mother had changed me for the better into a totally positive and carefree person. As my grip on reality loosened I developed false beliefs that we were financially very well off, and I started spending money that we didn’t have. As I was totally unable to sleep by then I’d wait until my husband slept and then sit up all night on the internet, ordering things and booking holidays we could never have taken with a tiny baby. I was very argumentative with friends or family who questioned my beliefs, I felt hugely frustrated that they couldn’t see things the way I could and couldn’t understand why they wanted to cause me distress by questioning things I said. I’ve since been told that as I’m fairly financially savvy in “real life” my arguments sometimes made a lot of sense. Some friends even began to wonder if perhaps I was actually still sane and had just done some very clever sums about our finances! Of course I’d actually done some very wrong sums, which would ultimately leave us with about three thousand pounds of debts to repay. So, what was happening to my baby boy at this time? Well, I was looking after his daily physical needs – nappy changes, baths, feeds, breastfeeding even slightly improved and I introduced some bottles too. But I wasn’t “with him” emotionally, and much of the breastfeeding was done with him perched on my lap whilst I made lists or surfed the web for things to buy. Instead of being focused on getting to know him and spending quality time to bond I was treating him as a set of chores that needed doing, that were interrupting all the other irrelevant planning and spending activities that were occupying my mind. All that manic-ness came to an end the day that a team of professionals knocked on my front door to assess me for sectioning under the mental health act. In the background, largely un-noticed by me, my husband and family had been trying to get help. What I haven’t mentioned until now is that I’m a mental health professional myself. So when that team knocked on the door I recognised some of them and for one mad moment I thought they’d just called socially to visit me and my new baby! But as the assessment commenced I gained a panicked insight into the situation I was finding myself in. Frankly I was terrified, and I gave serious consideration to trying to leg it over our garden fence. Instead I managed to resurrect from my addled brain enough professional knowledge of the mental health act to say the right things to stop them sectioning me, and they agreed to me receiving treatment and support in my own home. So on that day I got heavily sedated by medication, and my recovery, of sorts, began. What I didn’t understand then, but know now, is that I was suffering with postpartum psychosis, a rare mental illness that only affects approx 1 in 500 new mums. You can find out more about the condition here: http://www.app-network.org/ In my next blog I’ll talk about how stigma affected my engagement with the ongoing treatment that I needed, how I relapsed into depression, and the difference it made when I finally got access to a specialist perinatal mental health team.