Eleanor Segall Mandelstam is an author and mental health blogger who has written about what it’s like to have bipolar disorder.
Eleanor’s story contains mentions of thoughts of suicide, sexual assault, and spending time in hospital for mental health.
Could you tell us where your story starts? Was there a time when you were well and then developed a mental health condition, or do you think it’s always been there?
When I was 15, I’d had experience of anxiety, but I was in quite a good place.
My dad was diagnosed with bipolar disorder four years before I was diagnosed, so that family link was there. When I was 15, I started experiencing what I describe as an ‘agitated depression’. I didn’t want to go to school or to leave the house. I couldn’t speak, couldn’t eat properly. I was very frightened of life.
Did you get any support when you were a teenager?
Yes. My parents realised something was going on. I saw a psychiatrist through CAMHS who thought it might be depression. They tried me on an anti-psychotic medication, which for 15 year old is quite rare, but I was really poorly. It got me better for a bit.
I took my GCSEs somehow. Afterwards, my mood was going higher and higher … my parents thought, well, she’s finished her GCSEs and she’s going to parties with friends, being a teenager!
It then spilled over into what’s known as hypomania (a lesser manic episode). I was speaking very fast, meeting lots of guys, and being an outgoing, exaggerated version of myself.
I came down from the mania, and then by December I spiralled into this depressive psychosis. Psychosis is when you lose touch with reality – I was frightened because I thought that I was being abused by my family.
I ran out of the house, and at that point, my family knew I wasn’t safe – and I was already saying that I didn’t feel safe and needed to go to hospital. And I did get a bed in a hospital.
When bipolar isn’t medicated, you go through mania and depression in a cycle. I think I reached a kind of ‘mixed episode’ of depression with psychosis.
Do you remember what it was like to first be diagnosed with bipolar disorder?
When I got the diagnosis, I was living on a hospital ward and quite out of it. I only really appreciated the diagnosis when I left hospital.
At 16, to be given that diagnosis is such a big thing. You can’t properly process it, and you don’t know what it means for your future.
I remember being given a book and a lot of the things just weren’t relevant to my 16 year old self. It had things about managing your condition as an adult and pregnancy and stuff. But I was a kid!
It was a relief to get a diagnosis, particularly one that I agreed with. My dad knew how to support me because he’d been through it, but it was also a big shock and quite traumatic too.
Time in hospital can be complicated – other people have said that although being in hospital was helpful for their recovery, it wasn’t an easy experience.
It can be very traumatising. I can’t fault the hospital, they were excellent, but it is extremely destabilising. I’d say it took me at least six months to a year to really recover again.
What happened after you were discharged from hospital and then when you became an adult?
After my diagnosis I was on a mood stabiliser, a lighter one with fewer side effects. I took that for 10 years, alongside antidepressants as well (sometimes – you have to be careful with bipolar because of our mood cycles; too much antidepressant can make you high).
During those 10 years I had no mania – that’s just how my illness manifested. My depression and anxiety were bad at points, but it was manageable.
And then after those 10 years, when I was 25, we think the mood stabiliser stopped working. There were a lot of life changes around this time as well. I was plunged into a deep suicidal depression. It was horrific.
Having suicidal thoughts is painful. It’s not always that you don’t want to be here, it’s more that you don’t want to be here with the pain. That’s how it was for me – I knew I wanted to live, but I didn’t want to live how I was living.
Did you change medication and take something different?
My psychiatrist suggested I take lithium, which is the gold standard medication for bipolar. Lithium stabilises your moods. My dad had been on it for 20 years and had been well, with no episodes whatsoever! But I was scared of the side effects, and I didn’t want to try it.
And then (maybe because of not taking lithium!) I went from depression into a very severe manic episode with psychosis. It happened very fast. I’d just started a new job; I was going on the tube to work with racing thoughts about things like reuniting my whole family or helping homeless people by setting up a charity. I was also sexually assaulted by someone that I knew, who knew I was vulnerable.
I became very unwell and was hospitalised and sectioned. I didn’t have any insight into what was happening, I thought I was being wrongly ‘imprisoned’ by my family and the nurses. It was very difficult, but it did mean I could find the right medication and go to therapeutic groups and recover.
Hospital was a place to heal, but also a place that was quite traumatising.
What happened after you left hospital?
I was discharged to a day hospital because we didn’t want me to go straight from being unwell in hospital to just back home. I needed support, and they needed to start me on lithium, which involved monitoring like weekly blood tests.
It was very different to go from the inpatient ward to living at home but going to hospital every day. But it was so helpful. I saw a psychiatrist and nurses, and there were things like relaxation and art therapy. People weren’t as unwell as they’d been in hospital, so you could actually build relationships.
I started lithium, changed doses of antidepressants and antipsychotics, and had some therapy as well. After about four months, I was discharged back to a care coordinator and support worker.
Was it hard to adjust?
I had some psychology sessions, because being that unwell and being in hospital changes your entire life. I had good input from all the services in the NHS. It was really helpful, and I had a lot of support. But I had to learn how to integrate what I’d been through back into society – and how to cope with the fact that the worst thing possible with my illness had happened.
I had questions, like whether it would happen again and whether the medication would work. But I knew from watching my dad that things could potentially be – not OK, but as OK as they could be.
From there, I’ve just had this long period of recovery. I’ve had a lot of therapy. I developed kind of PTSD like symptoms, including panic attacks. I lost quite a lot of jobs as a result, and I couldn’t work for quite a while, though I was trying to get jobs the whole time.
And then I became a writer; things changed after I found that sharing my story could be healing.
Do you think that you’ve experienced stigma because of your diagnosis?
Where do I begin with this? Yes, I have!
I come from the Jewish community in the UK. For a long time in our community, as in many other communities, mental health was not spoken about in a positive way. Now it’s changed a lot – we’ve got great charities and things.
When I was a teenager, there wasn’t a huge amount out there. I encountered a lot of stigma from fellow teenagers. We didn’t have social media, there weren’t many mental health blogs – it just wasn’t talked about. People said I was crazy – I was called a paedophile once, would you believe, because I’d been manic!
Sometimes I still get stigma, for example, people aren’t always understanding about panic attacks and about how they can disrupt your life.
But I made a conscious decision to share my story. One of the reasons why I speak out is to educate my own community, but also because bipolar was always seen as this severe, really scary illness. I wanted to dispel that by giving a human face to somebody that lives with it, but also has recovered some way with it, or lives in remission.
And because I started talking about having bipolar, my dad did. I did an article for Metro about me and my dad and now he is a mental health speaker and he loves talking about it! We spoke in a local synagogue to 150 people!
At first, he was like ‘Eleanor, I’m going to lose my job if I talk about it’. And I was like, ‘No, you won’t. It’ll be fine’. And he didn’t lose his job, and he’s had that support. We’re both lucky that we have had the support and we haven’t been ostracised.
So there is still stigma, but I think it’s starting to fall in this country, which is good.
You share your story in lots of ways. How did that begin?
I’d been out of hospital for a year or two, and I was trying to think of work I could do from home.
I started by writing an anonymous blog for Rethink Mental Illness. It was like therapy, just writing about what had happened to me. I got great feedback; like 16,000 people read it in one day!
I slowly started writing for different charities and started my blog in March 2016. I wanted to write about what it’s like to lose jobs, have panic attacks, be at home, be single, live with a parent – being in the aftermath of mental illness. I had no plans to make it into anything else. And then it grew.
In 2018, the then head of blogs at Metro (who happened to have bipolar disorder) had written about mental health. I asked her how I could write too. I showed her my blog, and she commissioned me.
I knew I wanted to write a book. I didn’t really know what to do, I didn’t have a book agent, but I pitched to this mental health publisher and they said they’d love to publish it.
My book’s called Bring Me to Light: Embracing my Bipolar and Social Anxiety, and it’s basically my life story!
And the probably the last thing that I should say as well is that my friend Jonny Benjamin asked me to be in his book, The Book of Hope.
It’s been a lot of fun writing things.
It’s amazing that you started with a one-off, anonymous blog and it’s grown so much. You must have reached so many people with your story and made such a big impact. What do you do now to help you stay well?
The main thing is that I never miss my meds! And then I have therapy. I’ve tried lots of different types over the years.
Cognitive behavioural therapy (CBT) didn’t get to the root of my panic but was good for awareness. I’ve done other talking therapies. And over the past few years I’ve been doing EMDR trauma therapy for PTSD stuff. That’s been really helpful. I did some of the therapy through the NHS and some has had to be private because of the waiting lists.
My husband, Rob, has been helpful as well – but sometimes there are things you just want to discuss privately in therapy. He can’t be my therapist, effectively!
Rob is really kind and supportive; I have a very supportive family in general. My dad gets it because we’ve both been through a lot. My mum’s remarried and my stepdad is a doctor, so I’ve got their support. My family are kind and loving. They accept me for me and give me support, which allows me to feel better about living my life.
Also, part of it is luck that the meds work for me! And just things like, you know, making sure that I’m eating well, drinking enough water (especially on lithium, because it can go toxic), trying to get exercise a bit more (but not always!).
When you’ve been through something so traumatising, it’s about giving yourself time to heal. You need time to have therapy, take the meds, move forwards in your life, have new plans and new dreams.
I hope that’s helpful for young people to hear. You have a lot of strength and bravery in your story.
It’s not always easy – and I feel for people that rapid cycle or have episodes more frequently because it’s very hard.
It can be really challenging and really hard. But it helps to reach for that help and treatment.
I recognise that it’s not going to be the same for everyone. it’s easier if you have a supportive background – because a lot of a lot of people don’t have that or are also facing homeless or other things.
Your journey definitely wasn’t straightforward. It wasn’t that you were diagnosed age 16 and then everything was plain sailing from there. But you’ve reached a place where you’re achieving amazing things and living in recovery.
I think when I was 16, I’d love to have known that this was possible! So I hope it’s helpful for young people to read.
My experience with CAMHS was brilliant, but I know there was less pressure on services back then. From what I hear, it can be hard to access the right support now. I think Best For You is going to be really helpful with that.