Marsha McAdam, mental health ambassador, speaks to Thea Joshi about being diagnosed with borderline personality disorder. We talked about using her experience of mental health difficulties to create meaningful changes in services, and how those of us living with mental health difficulties can ‘bring our whole selves’ to work.
- Our latest forecast of Covid-19’s impact on the nation’s mental health
- Recovering at work: How businesses can support staff who may be facing trauma
- Was it catastrophising or not after all?
- Our resources for International Borderline Personality Disorder Month
Music by scottholmesmusic.com
Alethea Joshi (AJ): Hello, and welcome to Centre for Mental Health’s podcast. Here at the Centre, we are dedicated to eradicating mental health inequalities by changing policy and practice. I’m Thea Joshi, and I recently caught up with Marsha McAdam, who is a mental health influencer and ambassador. She has also been given a diagnosis of Borderline Personality Disorder. I loved chatting with Marsha about how she has used her own experience of mental health difficulties to create meaningful changes in services. We also talked about what has helped her to stay well throughout the pandemic, and how we as people working in mental health but also living with mental health difficulties can bring our whole selves to our work.
So I’m delighted to be here today with our very own Marsha McAdam. Marsha has been an ambassador for Centre for Mental Health for a few years now. And we are so grateful to you for your wisdom and your experience. So tell us a little bit about yourself, Marsha.
Marsha McAdam (MM): So I have a diagnosis of Borderline Personality Disorder, otherwise known as Emotionally Unstable Personality Disorder. And I have chronic fatigue, type two diabetes, and Fibromyalgia to name a few. But I’m also a physical and mental health campaigner. And over the last few years been given various opportunities and various platforms. And I’ve started to learn to have pride in what I do. And, at times, it does feel surreal, like I’m living in a fairy tale. And as I always say, it’s because of staff, people like yourselves from the Centre for Mental Health that encourage and support me to be me.
AJ: Well, Marsha, you’re such an asset and encouragement to our team. We love having you as part of our sort of Centre for Mental Health family, which is cheesy, but yeah, we really value you. And yeah, Marsha has been amazing, across lots of different platforms, in talking about her own experience, and also in shaping policy and shaping services, I know in Greater Manchester, but sounds like nationally. And so yeah, you’re an amazing asset to our team. And I just wondered if you want to tell us a little bit more about your experience of this diagnosis of borderline personality disorder.
MM: So this is about my personal experience, I know that the label can often be contentious. But for me, being given that diagnosis meant that I was then able to go on to have the life changing, and life saving, therapy called mentalization based therapy. It basically gave me the tools to pause all the persistent distress that I was always feeling. And to stop disassociating and learn to be in the here and the now, and to actually be able to build relationships, secure relationships.
But I also know that as a mental health campaigner that the label can often cause great harm to those on the receiving end of it, and often services be withheld or anything like that. And so as a campaigner, when I tell my story, I often want to tell it, so that people can have hope, with the right care. And that you can often go on to live a meaningful life and make friends and build meaningful relationships, feeling secure, and not worried that someone, the fear of abandonment, because that’s something that is really, really tough, you know, learning to trust someone, and they’re not going to disappear. And the sense of self-worth and sense of identity. And I used to self-harm with medication. And having gone through the therapy, I don’t do that anymore. But I do at times, use food as a control for me, because sometimes, even though I’ve gone through the therapy, I do find times distressing. But nowhere near as much as what I used to.
AJ: That is amazing, Marsha, and it’s so encouraging to hear about that mentalization based therapy. And as you said, you mentioned the hope that it gave you and I think for everyone living with a mental health problem, but maybe especially for people with a diagnosis of borderline personality disorder, that hope seems so critical and so vital, doesn’t it? Because I think often the narrative around it is so sort of bleak and, ‘there’s this problem with you’. And you know, that must feel really hopeless at times. And so I think that message of hope that you’re trying to share with other people that you know, things can get better, that relationships, meaningful relationships can be formed, is so important. I mean, what role has hope played in your recovery journey?
MM: So a few years ago, after receiving mentalization based therapy, and I then went on to become a service user representative, and it was someone from a crisis team who took me along. In the past, she supported me. And then she took me to the service user manager at the trust. And, from there, I’ve gone on to do things that I never thought would be possible. And in December, just gone, that manager actually invited me to be on an interview panel for staff for the crisis line with her, and it felt so amazing. And I speak at various conferences, and I feel equal, and that sounds really stupid to say…
AJ: Not at all, it doesn’t sound stupid, it sounds vital.
MM: But when for so long, you’ve had no hope, and self-worth and that. So for me, the last few years, I personally feel, and I’ve seen it as well, that the voices of lived experience is now being heard more than ever. There’s so many people that are championing it. And so, a few years ago, I approached a chief exec on Twitter and asked where his service user involvement was, and I was invited in to meet with him. And then from there, I went on to become the Greater Manchester Borderline Personality Disorder Strategy co-chair. And so I feel, especially around the label at the minute, there’s so many people that’re working actually really do something, and they really care. And they’re really passionate, and they know just how people have been let down in the past. And that’s really good.
But at the same time, sometimes I think, go and get behind them and push them along. Hurry up. I joke about chasing people around with my scooter. But it’s never fast enough. But we need to be hopeful. And with some of the funding that NHS England’s put in the Long Term Plan and the complex emotional needs provider collaborative projects, I’m hopeful, but like I say, it’s just a little bit…
AJ: Yeah, definitely that kind of, we find that so much in our work, that the pace of change can feel really glacial, I think Andy said that on our last podcast, and you can just think, oh my gosh, are we ever gonna get there, are we ever going to anywhere near equality in mental health, ever gonna get anywhere near people getting the services they deserve? But as you say, we have to have hope, because we are seeing change happen, even if it’s not at the pace we would like. And it is hugely to do with the voices of lived experience like yours, Marsha, being actually listened to, and being able to shape services and the direction of travel.
And it was really incredible to hear about the way that you’ve been able to work as part of boards, and really shaping the work of trusts and their service user involvement and their services. User involvement is stuff that’s talked about a lot more, isn’t it in the NHS and in services now. But it can feel tokenistic. It can feel like you know, a tick box exercise. And there’s something about really needing to convince people that service user involvement is not just a tick box exercise, it’s something that will make a meaningful impact and a meaningful improvement to services. I mean, hopefully, we’re preaching to the converted here, but if you had to convince someone as to why service user involvement is so important, what would you say?
MM: It gives someone this sense of purpose. And I always say that if it wasn’t for things that I do, I’d still be a recluse. And during COVID, technology and being involved in various webinars has actually kept me well. And I think that some conversations may not go as people that usually sit around the table, maybe used to, but I think that the real Conversations need to be had and, and everyone sort of leave their egos or that at the door. And that that’s where the real work can then be done. One of the proudest things I’ve ever been part of is an ambassador for the Centre for mental health, I’ve been given the opportunity to partner up with Sarah Hughes, your chief exec. And Professor Peter Fonagy from the Anna Freud centre. And I always say I’m biased, because he is the co-creator of mentalization based therapy. But in the last few years, it’s their encouragement. And, and that’s meant that I’ve gone on to have confidence to do some of the things that I’ve been doing. The fact that they give their time has helped me so much grow as a person, both in the voluntary work that I do, but then also as a person.
But then there’s the other thing of, last week or the week before, I got really poorly and had to go sort of and get some mental health support. And as a mental health campaigner, I was quite ashamed of that, which is daft. Isn’t it? Like champion for everyone else to get support…
AJ: Yeah, that’s so interesting. And firstly, I just wanted to say on the point about you saying, ‘Oh, it’s been so great for me to be involved in this work, and it’s given me purpose’, I just wanted to say that the value that you are giving to us as organisations is what we should really be talking about. And it’s amazing if these kind of platforms, these kind of opportunities, encourage you and build your confidence. And we love that. But let’s also be clear that your involvement as someone with lived experience gives us so much value, so much insight, and we are so grateful to you. So it’s very much that way around for us. So thank you.
But it’s really interesting as well, what you said about feeling almost ashamed of seeking support. It’s interesting, isn’t it, even as mental health campaigners as people working in this field, we can still kind of almost assume that we won’t need help. And maybe, I don’t know if there’s sometimes self-stigma there about who we think we are, and ‘we’re strong’ and so we don’t need support from other people. It’s really interesting, isn’t it, but really challenging, because you never want to be back in that place, do you, when you’ve been there? You’d rather, for myself, I know I’d rather be talking about it and advocating for better mental health support, than I wouldn’t be the one having to receive it, because it’s just rubbish.
MM: One of the things with a lot of the policy stuff that I’m involved in, experts by occupation do approach me and sort of tell me a little bit about their own journeys. And as a mental health campaigner who struggles, like you said, self stigma, I can’t even begin to imagine what it is like for someone who is a mental health professional. And you know, how like, it’s not parity of esteem where, where people are encouraged in workplaces to talk about their mental ill-health and everything like that. At times, I don’t think we’re near there yet.
One of the things about borderline personality disorder, what keeps me well is having boundaries and routine. One of the things that I was worried about is at the beginning of COVID, everything almost close didn’t it, and so imagine those people that would have had their 9-5 job that would have gone out to work, you know, that was their identity, and then all that stopped. And that that was something that, I know it sounds a bit way out there but it, it was something that sort of worried me, and how do we make sure that we have that self-worth?
AJ: I just think that’s such an important point, isn’t it? And I think you’re right that while there is work going on to encourage people to bring their whole selves to work, I think that’s something that Mental Health First Aid England have definitely been doing to try and encourage us, like bringing our how whole selves rather than hiding away things that we feel stigma about or feel embarrassed about. But yeah, it kind of becomes a whole new level, doesn’t it, when we’re talking about people who are working in the healthcare system, even in the mental health care system, who have their own lived experience? And so it kind of brings a whole new meaning, doesn’t it, to the value of lived experience; 100% from people who’ve been through the system, but also more widely in terms of staff being able to bring their own lived experience into their work. And I think that’s something that we, I mean, I’d like to say I hope that it’s becoming more of a reality, but I imagine there’s a long way to go.
MM: I think there’s a lot a long way to go. I mean, which hat would you were so luckily, you know, I can say, okay, Marsha, I’ve got BPD and that and sometimes things are difficult. But it’s like when you go into a meeting, do you go as Centre for Mental Health? Or do you go as you Thea?
AJ: Yeah, that’s a really interesting point, because and that’s something I do, I totally empathise with you about because it’s sometimes difficult when you’re in a meeting with you, I find with my Centre for Mental Health hat on, people start talking about various different things, immediately, my own lived experience comes to the fore, and you think ‘well, hold on, I don’t agree with this as someone…’ But actually I would always, you know, and despite self stigma, and despite the barriers that we’ve put up between our professional and our personal lives, I would always say that bringing that lived experience with you into the room is actually hugely, hugely valuable. And that’s what we’re talking about in terms of roles you do, isn’t it, is that you don’t suddenly become Marsha who has a professional hat on; you bring your whole self. And that’s where we get this amazing value of really having lived experience as a core, sort of baked-in, through our everything that we are doing, rather than it being some weird tick box tokenistic thing, like, ‘oh, have we consulted someone with experience?’
MM: I think the Centre for Mental Health and the ethos and that, maybe it makes yourself and others feel secure and comfortable to know that. And that would be amazing if that could help in elsewhere, wouldn’t it?
AJ: Yeah, 100%. And I think also, I mean, without going off on a tangent, that’s something that can be really difficult in workplaces generally, because we have our, whether it’s mental health or completely a different sector, we have our sort of ‘professional selves’. And we have these values that we think we need to promote, like competency and capability and strength and all of these things. And sometimes that doesn’t lend itself to actually sharing or expressing vulnerability or doubt or anxiety, because we don’t see those as leadership qualities. And actually, I think there’s, without harping on about it, there’s something really valuable about saying, ‘let’s bring our whole selves with our strengths and our weaknesses and our fears and our doubts’, because actually, those things will shape us as individuals and help us to work with greater empathy and greater insight.
MM: So last week, Centre for Mental Health did your most recent forecast for the mental wellbeing or the mental health of the next few years, and it was really stark about 10 million people. And, yeah, my worry is, I have had boundaries, I’ve had routine and everything. And then I’m going back into the workplace after all this trauma that’s been COVID. And then it sort of, I’m just saying me, but you know, just using that as an example, I’m in going back into a workplace and just supposed to be getting on with things.
AJ: You’re right, that maybe for some people, it might be going back into the workplace that they find really difficult, and that’s where they see mental health difficulties emerging. But yeah, our figures are that up to 10 million people are likely to need mental health support as a result of the pandemic. And as my colleague Nick O’Shea mentioned, you know, this isn’t that’s not even the figure of people who actually will experience some kind of mental health difficulty. This is just the people who will actually seek support. So it’s actually a larger number arguably. And there’s lots more about that on our website. I’ll stick it in the show notes.
But it also made me think, you know, we did some work last year with the City Mental Health Alliance on how businesses, how workplaces can support their colleagues who might have experienced trauma as a result of the pandemic as they come back into work. So I’ll also link to that, but yeah, we’re gonna definitely need a lot of empathy with each other, and a lot of understanding and self-care and kindness and all that kind of stuff, I think to, to do it well.
MM: I think it’s only the tip of the iceberg, really, those children that were at home during COVID, and they’ve experienced things, probably mum and dad really stressed out and everything else, and the usual sort of coping skills, going out with their friends or something, they’ve not been able to do that. And I think that, with me having BPD initially, you know, the traits were from things linked back into my childhood.
And, you know, we talk about early prevention and stuff like that, but my main concern, and it really terrifies me is that we’re seeing all this stuff, but when are they actually going to do it? I mean, how much more evidence do they need?
And since the first month of COVID, people have been saying these things, and as someone who does suffer with distress and that, and I overthink things, and at the beginning of COVID, I wrote a blog, and I was talking about how I used to think, you know like on those crappy Saturday night movies, and the end of the world and you know, and I used to sort of think, right, I would get a camping stove, and you know, those rubbish, zombie movies and everything. And it was always sort of catastrophising. But now COVID has taught me that those some of those feelings or those anxieties were very real. But I was able to talk about that. And that’s what helped me, by writing blogs and being part of podcasts. And so while not everyone has those opportunities, because they may not be confident, I would encourage them to use their voice, and that their voices matter.
And I guess, May is international borderline personality disorder awareness month, and this is one of the reasons why we’re doing this conversation. And I guess on some of the things we may have gone off on a little bit of a tangent, but that’s sometimes what my head is like.
AJ: So yeah, so May is borderline personality disorder awareness month, and we’ve got lots of resources on our website about that. And I just to put you on the spot here, I just wonder, to any kind of healthcare professionals listening, perhaps people who are working with people with that diagnosis, what’s the one thing they could do to really help and to make a difference to people living with this diagnosis?
MM: So if someone is in distress, and may be acting out, don’t be judgmental, think about why they’re feeling the way or why they’re acting the way that they are. And when I look into someone’s eyes I can really sort of see, that sounds really really daft, but I always see kindness, in mental health professionals, body language does really matter and I know that sounds… but as someone who has gone into situations and been so anxious, automatically I pick up on body language. I know of all the sort of danger signs are that around me. So if someone shows you kindness and you’re not used to that, that really matters.
AJ: 100%. That totally makes sense. And it’s strange, because it’s such a simple thing to say. And yet, so many people don’t experience that. And it’s one of the things that will make the biggest difference to people’s experience in a time of really great distress. And so yeah, 100%. Marsha, I could go on talking with you all day because I just I love our conversations. Thank you so much. But yeah, it’s just been a joy. And thank you for sharing your own experience of what is a really challenging situation. As I mentioned, we’ve got lots of resources about borderline personality disorder on our website. I’ll link to that in our show notes. And Marsha just thank you for everything you do for us at Centre for Mental Health and we’re so grateful for you.
MM: Back at you.
AJ: Really hope you enjoyed the episode. And do let us know what you think by getting in touch via our website or tweeting us @CentreforMH. And to join us in the fight for equality in mental health, please donate at www.centreformentalhealth.org.uk/donate. See you next time.