Transcript:
Why are you becoming an Ambassador for ADHD UK?
I was interested in becoming an ambassador for ADHD UK because, first of all, because I wanted to give back. I found a real sense of comfort in having the community and the advice and support and empathy that I found in ADHD UK support groups and the organisation as a whole. But on a larger scale, I would say because nationally and globally we have a long way to go in terms of raising awareness of what ADHD really is, who it affects, and how it affects them. And there’s so much that needs to be done in terms of educating the general public, people in healthcare, people who are writing policies. And ADHD UK are trying to address that, and the impact of ADHD on individuals, the rate of people with ADHD who attempt suicide, or, who are in prison, or, may struggle with addiction issues, for example, the impact it has on people’s lives is real, and the fact that it’s so hard to get diagnosed and so hard to get treatment that a treatment is so inaccessible. It’s not okay, and if I can help by lending my voice to that, then why wouldn’t I?
Tell us about your diagnosis journey.
So, my diagnosis journey started about two years ago. I was going through a really tough time. My, my dad had recently had a cardiac arrest so I was extremely anxious. I had bought a house and all of the stress around that. My partner and I had a messy breakup and my work-life balance was non-existent and I was speaking to a friend who had ADHD about the visceral and very physical feeling in my chest when I thought about the breakup, and they said to me that that sounded like RSD which stands for Rejection Sensitivity Dysphoria, and that’s a symptom of ADHD. And when they said that, I very much was like, I don’t got ADHD. Because I believed all of the cliches about what ADHD looks like. But I started doing my research, and as I did that I realised that all of the mental health problems that I struggled with my entire life, and had never really been able to find an answer for, and when I was given support tools, they never seemed to work. It all started coming together, and there was this whole tribe of people who thought the same way that I did, and did things that I thought were normal because neurodiversity runs in families, and I didn’t know they weren’t. And It started to come together. So, after starting to just about believe in myself but still gaslighting myself a lot, I finally made an appointment with my GP, and the first thing that they asked me on the phone was, How do you do in school? Which kind of got my back up a bit, because, greys don’t say anything about whether you’ve got ADHD or not. And, I was intelligent enough to do decently at school but I knew I could have done better if I’d been able to revise and able to concentrate. So I said all of this and I spoke about all the symptoms that I had having heavily done my research by this point and at which point the GP said Well, to be honest, I don’t really know anything about ADHD. So they agreed to refer me, but they couldn’t give me any idea of how long the wait would be, and I knew that in some parts of the country, the wait is five years, and I couldn’t wait five years. I didn’t want to get back to where I had been a few months before, when I was in that really bad place, so I looked into private options. And I ended up going through a charity and they did an initial assessment and they, based on that assessment, they said that it’s highly likely that I did have ADHD. And then I went on to a psychiatrist who gave me the official diagnosis. And it was funny actually, because at first they didn’t say that I had it. They listened to me talk, they asked me some questions. And then they said, right, so we’ll start you on this medication. Cue me being. It’s like, you’re saying I’ve got it? And they said, yeah, yeah, no, it’s very obvious. And that was when I just about started to believe in it. But even then, until the medication started working, I was still thinking that I must have tricked myself into believing it.
So yeah, that’s my, that was my story. And I feel like I understand myself so much better now. So prior to my official diagnosis, I was obviously doing a lot of research and I started going to ADHD UK support group and really feeling like I was finding the community there and the people that were speaking about their problems that I could relate to and some of the advice that they could offer was brilliant advice and because of that, finally understanding what was going on inside my brain and being given these tools to address it. I started getting bolder about advocating for myself and I think, I think there was a definitely a layer of grief and bitterness about the fact that I spent so long thinking that all of these things I was struggling with, it was just because I wasn’t trying hard enough. Despite the fact that I kept burning myself out, or that I was just lazy, or unmotivated, or whatever else, and just internalizing all of that. So there was quite a lot of grief around that, and I ended up really strongly rejecting that, and being very open about having ADHD. And the reason that I decided to do that is because I didn’t want anybody else who was around me, but be it colleagues or friends or family to be in that situation and, and to like myself, feel like that there was nobody who could understand the experience or, and that they didn’t have the knowledge of what ADHD looked like so I was very open about it and by being open about it I was able to help others and help others to advocate for themselves and I’m really proud of that and it’s part of the reason that I now volunteer for ADHD UK and proud to be an ambassador.
Have you ever had suicidal thoughts?
When I was 12, a career coach asked me what I wanted to be. By which they meant a judge, a doctor, a whatever. And my response was, and all that I could think of, was that I wanted to be happy. Which is, I think, equal amounts wise, and incredibly Heartbreaking to think about, but, and when I reflect on that, I think that as a 12-year-old, that seemed like such a, a dream, it felt like, that was to me, what, walking on the moon, being an astronaut, or being a rocket scientist, I don’t know why these, these all have space themes, but something unobtainable and almost impossible. And, as far back as I can remember, my memory is not great, to be fair, but as far back as I can remember, I remember knowing that suicide is how my life would end. And I didn’t know when that would be. In my mind, it could be in six months, it could be in 60 years, but there was some part of me, deep down, that saw that as an inevitability. And getting, yeah, I think, but since I’ve been diagnosed and having these explanations, I’m finding other people who can empathize with me and being, being given tools to help. I’m just going to read it out a little last bit, sorry. But getting diagnosed and having explanations and the right tools and finding a community and people who can empathize with the way that my brain works. Knowing that I’m not alone in this, and that all the things that I perceived as flaws in my character are actually largely due to my diagnosis.
For the first time in 30 years, I actually, I feel like I have a chance. There’s a second lease of life. So the end of my story doesn’t feel predetermined. I’m actually looking forward to finding out what’s next, rather than having this kind of deep internal gloom and doom hanging over me. And when I think about the amount of people that have committed suicide, either whilst knowing that they had ADHD, and perhaps not getting support. Or, not knowing that they had ADHD and feeling like all of those, those negative comments and struggles and negative self-talk about themselves is true. It’s just, it’s just heartbreaking. And it’s just so sad that people are still dealing with that.
What would you like to tell people generally about your ADHD?
Well, so ADHD is a bit of a special interest of mine. So, I could probably talk for an hour about what I’d like people to know about ADHD. But I think there’s a few key things. I would say that, first of all, it’s terribly named. That it’s very common. People don’t realise how common. And that there are a lot of people out there who are undiagnosed. Especially people raised as female. Because for a long time, it wasn’t really recognised. In fact, we’re only really just starting to acknowledge it and do the research and recognize it and let go of old fashioned beliefs about it, which is why there has been such a big movement around it recently. On that note, it’s not a fad. And nobody is seeking diagnosis because they think it’s trendy. They’re seeking diagnosis because they’re struggling and they are desperate for help. And that’s always been the case. ADHD has always existed. We have evidence that it has always existed under various names and all we, we can look at historical figures and say that it has always existed. And that just because it’s a relatively new term doesn’t mean that isn’t the case. And I guess as well just that the fact that awareness is increasing and people are getting support, I don’t see how that can be a bad thing and some people’s attitudes towards that really stink.
On a more positive note, I would say that a lot of the rhetoric that we hear about ADHD is either completely incorrect, it’s massively minimising, or it’s incredibly hurtful and that if you want to know more about ADHD, the first thing you should do is let go of the things that you think you know and really dig into the research in it because you’ll be amazed by what you learn. And I would say that we’re not broken. We are disabled and we’re disabled more by people’s attitudes and by the society that we live in. But that we don’t need to be ashamed, we shouldn’t be ashamed, but that people will try to shame us. And it’s incredibly cruel and it’s incredibly hurtful and it’s very hard not to internalise that. But there is hope and there are people who are pushing for change and I’m really hopeful that things will change over the next few years.
What would you like to tell your employers about your ADHD?
So something that I would like to tell my, not just my employers, but all employers, is that awareness around neurodivergence is growing and that’s a good thing. And that future generations of employees and customers are not going to accept an organization that is not inclusive of that in the same way that we wouldn’t accept an organization that showed themselves to be sexist or racist or homophobic. And I think good organizations are getting ahead of the curve now and trying to educate themselves and trying to make change. And it needs to be taken seriously and it’s not just around neurodivergence. It’s around all mental health because life is not about work. Work is part of life but it shouldn’t be that work is so stressful that it ruins the rest of your life and employers have got a responsibility. To look after the well being of their staff so yeah, I think I would say be proactive or fall behind.
What would you like to tell your school about your ADHD?
So in terms of my school days, which seem like a long way away, and I honestly can’t remember much of them. I guess I would just say though, that a child being bright and seeming well behaved doesn’t necessarily mean that they’re not struggling, that grades shouldn’t be a predictor of mental health, and it shouldn’t be that you have to have awful grades or bad attendance or just be at breaking point before you’re offered mental health support. In fact, I personally believe that it’s the responsibility of parents and schools to ensure that children are taught how to look after their mental health. And that access to that mental health support is given to everybody, regardless of how they’re struggling or they’re not ready for urgents. It’s the foundations that we carry with us for the rest of our lives and it’s really hard to unlearn those things, if you’ve not been given the skills when you’re younger, but also I think that’s maybe a message for the government, not just schools.
What would you like to tell your university about your ADHD?
So when I was in university I wasn’t diagnosed and I did, I did manage. But not without detriment to myself. I would say that it can be really overwhelming for anyone. More so, arguably, if you have a disability or are not a divergent. But new town, having to organise yourself, managing your finances independently, living with strangers. There’s a lot going on and for, for me, certainly, and for others, it’s the first time that I’ve had to manage my work independently and I really struggled with that. I think perhaps librarians could be a really good resource for that in terms of adapting the ways that they teach people to do research and study for people whose brains work differently. But also I think there’s a real need for it at the moment for librarians and, and, and lecturers generally, but I think librarians are a really key resource to have the skills to recognize neurodivergence because obviously the infrastructure isn’t there in schools at the moment, so not everybody’s being spotted in schools. And at the moment it works that schools can refer people for an ADHD assessment. So, whereas that in a university, because a lot of people. of university age won’t have been spotted in school. I would also say that the current move towards teaching a lot of things online is gonna be really difficult for all students. It’s gonna be really isolating and hard for everyone. Never mind neurodivergent students. All students.
What would you like to tell the NHS about your ADHD?
I mean, there’s so many things you could say about the NHS and ADHD and mental health services in general. The big one is that physical and mental health can’t be separated. I know that a lot of my physical health problems have come from my mental health. I know that now, but I didn’t know that for the last 30 years. And nobody suggested it. There is a lot of ignorance, and a lot of ableism, and a lot of stereotyping within the sector, and it’s horrendous, and it’s frankly terrifying. And there are a lot of people being misdiagnosed, dismissed entirely, or being gatekept from accessing services that they need. By people who are not knowledgeable enough to judge those things.
I would say that talking therapies are not a panacea. They do not work for everyone, and stop just referring people back to them all the time. Because yes, they can be great, and they are a powerful tool, but it can also be woefully insufficient and even harmful for neurodivergent people. I would say that more money needs to be spent, but we all know this, and again, this is the government. And in fact, I would also argue not that anyone looking at the statistics It doesn’t take much intelligence to realise that not investing in mental health services is a false economy. People are dying, people are being, turning to drugs, they’re ending up in prison, they’re unemployed. Investing in mental health services would assist with all of those things. And we need to lose the stiff upper lip attitude, and the keep calm and carry on attitude, because it sucks. I guess, you know, also just not to beat on the NHS too much. Because I understand it’s a system problem. I would also say that I recognize that there’s a lot of people in the NHS who are really trying to help people and are dedicated and are pouring themselves into the jobs and working so hard to try and help people, but they’re struggling against a system that is undervaluing them and that is under funding mental health.
What would you like to tell your friends about your ADHD?
So this is a bit of a funny one because a lot of my friends are actually neurodivergent and I think that neurodivergent people quite often attract each other like magnets and so I guess I. I do tell them about things that I find out about it, I try and share my knowledge and I try to encourage people to let go of self-doubt and negative self-talk, talk about themselves and offer alternative explanations based on research and science, and encourage them to engage in things like support groups or to get diagnosed because it’s really hard to start on that journey and I know what a difference it’s made for me. So that’s what I do tell them is, yeah, learn as much as you can, find your tribe. Seek diagnosis, seek support. I guess I’d also say, thank you for the times that I’ve screwed up and you’ve been patient with me. Thank you for giving me grace and recognising that a couple of actions that were foolish and made when I’ve not been at my best don’t reflect who I am as a person and for recognising my value. And yeah, just sticking things out of me.
If you could have a magic wand, would you entirely remove your ADHD?
I don’t think, ethically speaking, I could remove my ADHD. Not knowing what I do now, I’m not feeling this urge to share this knowledge and help others who’ve been in the same situation and had similar experiences to me. If you’d asked me before I got diagnosed and before I started engaging with support and working on my self-esteem and feeling empowered and advocating for myself, I would have said yes, because all the pain and just extreme emotional exhaustion and literally exhaustion, if you could tell, if you told me that you could get rid of those. I would have gone for it, but now I know that my ADHD is part of me. I was born this way, and I can’t just cut it out like it’s a cancer. That would be removing something intrinsic to who I am, like changing my eye colour, or even more so than that. It’s just intrinsic to who I am. I can’t just cut ADHD out of me, and I wouldn’t want to betray myself and the lessons that I’ve learned and the good that’s come with the bad. And betray other people with ADHD by saying that I would remove it. So, yeah, no, I wouldn’t remove it. None of it. I’d keep it all, even the bad stuff. Because it’s made me who I am.
Tell us about one of your favourite ADHD strategies.
So, to be honest, I have a favourite ADHD strategy every other week. Because we love novel things. But I think that music is pretty powerful as a tool. I am extremely sensitive to changes in my environment and to things that affect my mood, like a negative email, let’s say. And one of the most effective ways that I can regulate myself is by listening to music of the mood that I want to be in. So I need to go to sleep, I listen to calm music, I need to feel energized and motivated, I listen to energetic music. Other than that I would also just say that letting go of the right way of doing things, which is pretty vague I know, but we’re stuck in ideas the way that we should behave because we’ve been trying to fit in our whole sometimes, especially if you’re late diagnosed. And actually, every task that we do as an ADHDer takes so much mental energy to do. It’s not just brush your teeth. The way that our brains work is we go through every single process of that. We, we do walk to the bathroom, pick up your toothbrush, run some water over it, put your toothpaste on. Put that to your teeth, like, time yourself doing this, go round the top and blah blah blah blah blah blah. It’s a lot of mental energy, and that’s what people don’t realise about ADHD is that it’s not just do the task, everything takes so much energy. So if you can remove those barriers for yourself by just making it easy, easier and cutting out some of the faff and do it. So if buying frozen food, frozen vegetables, pre prepared means that you’ll eat your vegetables. That is better than buying not pre prepared stuff and letting it go rotten in the fridge. On the note of fridges, put your fresh stuff in the door because then you’re less likely to forget that it exists. Don’t buy clothes that need ironing. We hate ironing. Don’t learn to drive a manual just because that’s what everyone else does. Just go straight to automatic, it’s easier, there’s less to think about. Just let go of all the ways people think you should do things and do them the way that works for you. And don’t be ashamed of it. Easier said than done. It’s definitely the biggest thing I’ve learnt.
What is the worst thing that has happened to you as a result of ADHD?
I think, one of the worst things, and it’s not really a single instance. It’s multiple instances. For me, emotional dysregulation is It has been such a big part of my experience with ADHD, and it’s improved massively since I started taking the medication. But, I would get myself so upset, and I would tie myself in knots trying to understand why I was upset or find a solution. And I couldn’t reason with myself and nobody else could reason with me. And it felt so debilitating. And because of that, my relationships struggled and there were so many days of like crying for hours at a time and think overthinking things for weeks at a time to, to a point that it was debilitating and I couldn’t get on with my life. And I think also because of that, I ended up staying in relationships that weren’t really unhealthy and codependent and even abusive at times because my self esteem was so low. My relationships with my friends suffered, my relationships with my parents suffered, and yeah, now that I’m on medication, I’m so much more capable of feeling that what I’m feeling or hearing somebody say something negative and pausing and rationalizing. That just didn’t seem possible before. But equally, I’m also able to recognise when somebody’s crossed a line, or they’ve done something wrong, and put my foot down, and tell them, or even move away from that relationship without feeling that sense of rejection sensitivity. So, yeah, I think the worst thing that’s happened is just, overall, the many days, weeks, years that I have spent upset about arguments and relationships and feelings that probably 90 percent of the time are pretty irrational, which I know now. Didn’t know that then.
What is the best thing that has happened to you because of ADHD?
So it’s kind of difficult sometimes to look back on things that have happened and know what’s because of ADHD and what’s because of my personality. So did I go and do music at college and have a really great time because my ADHD made me impulsive and creative? I don’t know. It was a great time. I don’t know if it’s due to my ADHD. So, I’m not sure I can really pick a singular moment. I think one of the best things that’s happened to me overall is that I really care about people and about work that interests me. And about living in accordance with my values and because of that, I’m brave, I will confront opposition, I will push for change, I will protect things that I care about and I dare to take risks, which I don’t think that everybody does have that, and I appreciate that’s not a specific example, but it feels like I’m just starting to find my voice now and I’m having a second lease of life. And what I’m doing at the moment is I’m working on myself, but I’m also trying to find ways to help other people with ADHD. And that feels right. So I think the best is yet to come. So watch this space. Thank you.