Terri Keeley

Transcript:

Why are you becoming an Ambassador for ADHD UK?

I wasn’t diagnosed until I was an adult. Prior to that, I spent a lot of my time being very confused about myself. And I dealt with a lot of really negative emotions around that. But when I found out that I had ADHD, one of the first things that happened to me after that was that I started to accept myself.
It breaks my heart to know that there are so many people who are the same as me, but don’t know yet that they have ADHD, and they feel the same way as I did about themselves. And so I want to make sure that we, as a community, as a society, are reaching those people so that we can helping them to learn about themselves and to realize that they’re not bad, stupid, slow or inconsiderate. Their brain just works differently.

Tell us about your diagnosis journey.

My journey to getting diagnosed started when I was 21, and I was at university. I think I was doing research for an essay and I came across a journal article on ADHD, saying that young girls were not getting diagnosed because their symptoms looked more like daydreaming. And I related to that straight away. Even as a child, I knew that there was more to my daydreaming. And so I thought I may have ADHD and that’s when I decided to pursue a diagnosis.
I spoke to a professional, that I knew was working with children at school who had learning difficulties, but she said “Oh, don’t be silly. You’d be bouncing off the walls if you had ADHD.” And even though that was not what I read in the journal article, it was then, that I think I realized that I didn’t really have it in me to have the same argument over and over every step of the way.
So I gave up. Then I went into my 20s, and even got to my 30. I still thought that I had ADHD but hadn’t looked into it properly yet. And then I found out about the symptom Executive Dysfunction and again, just like with the article on daydreaming before that, I instantly related to it and I knew it described everything about me, so it kind of spiralled from there.
I did a lot of research. I was totally absorbed by anything ADHD, and I learned as much as I could about it and its symptoms. And in the process, I was also learning a lot about myself. For example, I have a job that is at odds, I would say, with my ADHD brain. I have to be very organized, I have to be always on time, I have to have great memory and great attention to detail. And these are all things that my brain just does not do. And I had so many situations where I thought I couldn’t do anything, and that I was a terrible person.
But I enjoy my career and it wasn’t something that I wanted to leave. And so finding out that I could potentially get a diagnosis and get treatment for it, that would help me at work spurred me on to get help as soon as possible.
I asked my GP about Psychiatry UK and the Right To Choose, but she was not aware of any of that, so she suggested I got on a five-year waiting list. But at the time, I was in a place in my life where I needed help sooner. I was lucky enough to be in a position where I could save some money and go private. So I opted for private assessment and treatment. It was very expensive though, and it took a lot longer to move to Shared Care, than I thought.
I’m now in Shared Care, and I still struggle because my doctor doesn’t know a lot about it, and neither does my CBT therapist, so I am still trying to help them understand how they can help me.

The impact of ADHD and resultant increased risk of suicide is an important topic. Have you ever had suicidal thoughts?

I have. A few years ago I was dealing with grief and with some mental health issues and I did then, but I got help as soon as I realized that I was struggling in that way.
My doctor gave me antidepressants, and at the time, that was very helpful. I didn’t manage to get any further therapy, because even though I tried, I struggled to get anywhere, due to the limited NHS mental health help available. In time, I started to feel a little bit better, the grief went away in time, and with it, the depression and anxiety.
But then a few years later, and this is leading up to me deciding to get the diagnosis for ADHD, I found myself in a place, where I was constantly having a burn out.
Now know it to be ADHD, but at the time I didn’t know what it was. I just thought it was me, just constantly failing. And I had those periods where I was doing great and I was really proud of myself. But then, with ADHD, you’d just get overwhelmed and burn out, and you get really tired. And at one point, I just got to point, where I thought to myself ” It’s been happening my whole adult life, and realistically I’ll have to accept that it’s going to happen for the rest of my adult life and I don’t want to do that, I just don’t.” I was too tired and I didn’t have the energy for it. And I thought, “I have got a really great life and I’m happy. But I just I’m too tired sometimes.” And I think there are things that could be done to make it easier for people with ADHD, and that’s one of the reasons I am advocating for it.
There are expectations of all of us to perform in a certain way, that I don’t think anyone, even people without ADHD, can meet a lot of the time. But I think if you have ADHD and you have gone your whole life without a diagnosis, without knowing what makes you the way that you are, you survive really by internalizing all of these feelings, and it just looks like self-hatred and you don’t even know it. Now that I am in a place where I could analyse my past opinions of myself, I realise that I didn’t have patience for myself. I was always angry with myself. Nothing was ever good enough, and I wouldn’t have seen that as perfectionism either. At the time, I just saw myself as trying to be a proper person, but never managing to be a proper person. And, while I never tried to end my life, there were times where I was just so low and tired, that I just wanted to die because it seemed easier. Because I thought it was too hard to live in a world where you don’t operate the same way as everyone else.

What would you like to tell people generally about ADHD?

It’s important to not judge a person’s motives or their actions. A lot of things that people with ADHD do make it look like they don’t care, or they’re just not bothered about things, or they’re not smart enough to know something.
But that’s not the case. It’s just because we have a different set of priorities. So whereas it might look like we don’t care about something, what is actually happening is that we care so much about something slightly different, that we’ve forgotten everything that we knew before and everything that we were supposed to do.

What would you like to tell your employers about your ADHD?

If you have a mad dash at the end of the day, where there’s a deadline, and there’s not enough people, and there are things you don’t know or can’t do, that’s where I can help. If you need a problem-solver, or you need research done, that’s where I can help. There are ways in which my brain works very, very well. And I think I would like them to know the ways in which they can utilize that.

What would you like to tell your school about your ADHD?

I was a daydreamer at school. I didn’t get into a lot of trouble. I was talkative and I got moved around the lot because I would get anyone who was near me talking, but my teachers liked me. I did okay at school, and so I wasn’t a worry at all to anyone. But because I didn’t cause any troubles or worry, it also meant that I went through school with a disability that no one ever noticed. I would like my school to know the different ways in which ADHD symptoms can present, so that they can recognise them when children have them. That is important, because I think the earlier people are diagnosed, the better their prospects in life are. Because once diagnosed, children can be given the tools that they need to work with the brain instead of against it.

What would you tell your university about your ADHD?

At university, I tried to do way too much, and produced a way too little with the amount of things that I set out to do. And I think part of it was that I found myself in a whole new structure that I didn’t fully understand. And maybe if they had more things in place for people like me, more learning opportunities that would help me understand the structure I was working in, that would have helped me to structure myself and my work a little bit better. And I think that they did try and put in a decent effort, but I think, with ADHD, there are still more things that could be done to help students with ADHD.

What would you like to tell the NHS about your ADHD?

Both my GP and my CBT therapist view stress as an umbrella term for anxiety and depression, but I think there are a lot more ways in which our mental health can go wrong, than just seeing it as depression or anxiety. Loneliness, for example, is a huge problem. It’s a problem within ADHD, particularly. And loneliness isn’t anxiety, and it isn’t depression. And people with ADHD, often experience overwhelm and burnout, as well as tiredness, and those affect your immune system, and make you unhealthy. And then we go to the NHS, but overwhelm is not recognised as a mental health problem, so we end up being prescribed anti-depressants or Propranolol, but that is not what is needed. I would like the NHS to accept that there’s more to treat at a base level than just depression and anxiety.

What would you like to tell your friends about your ADHD?

I might forget the birthday card. And I’m always going to take days to reply. And I’m probably never going to reach out first, but it doesn’t mean that I’m not thinking about them all the time. And I am always there for them, but I am not texting them. I am not going to remember to.

What would you like to tell your parents about your ADHD?

I can be quite impassioned in my beliefs, but I’m also very open minded, and I think it’s an ADHD thing where we’re not necessarily pushing to be right or wrong, we just want to learn everything we can about something that we’re interested in. And then the second part of that is that the way that I structure sentences doesn’t always make sense. I sometimes get into arguments with my family, when I am trying to work out what it is that they’re trying to say to me. And they get really mad about it because they think that I’m arguing with what they’re saying, and I think that they think that I’m being a bit arrogant in my approach, being like, “Can you explain this more? This doesn’t make any sense”. But they should know that’s not the case, I simply have no idea what they’re trying to say to me.

If you could have a magic wand, would you entirely remove your ADHD?

I would keep my ADHD. I might remove the executive dysfunction. That one really gets me. But I wouldn’t get rid of anything else. I enjoy my own company, and I can spend time alone because I like the insides of my head – it’s nice. I’m very interested in lots of things, and I spend a lot of time just pondering stuff, and I like that my mind’s wandering to all kinds of interesting places. I wouldn’t risk losing that.

What is the worst thing that has happened to you as a result of ADHD?

People with ADHD can have a processing delay, and I read that that’s because a neurotypical brain will process only what’s relevant, whereas an ADHD brain will try and process everything. I think sometimes that can be a benefit to us, because having all that information, could mean we can make decisions faster, and spot and solve problems much quicker. But also, if I’m particularly stressed, if I’ve got a lot on my mind, then I experience a processing delay, and I struggle to notice things as they arise for a lot longer than a neurotypical brain would.
The first time that this became a problem was about eight years ago. I didn’t know that much about ADHD yet at the time, I still thought that I was just an intense daydreamer, and that was my only issue. I’d just had a stressful day at work, I’d just broken up with my boyfriend, who I lived with, so clearly I must have had a lot on my mind that day. It was night time, and I was walking up a really long road in the centre of Manchester, and I could see at the end of this road a man on top of a building. I could see him for ages, but I didn’t I didn’t process it, and there was no analysis that went into my accepting that there was a man on top of a building… it was just a man on top of a building. And I know that that’s not normal for me. I would worry about something like that, but that day I watched him for so long. It was 2 – 3 minutes, before I realized that there was a man on a roof at night for no reason, and that he was in danger. And as soon as I realised, I ran. But he jumped. And there was probably a 2 – 3 minute space between him jumping and help arriving. If I hadn’t had this delay, help probably would have arrived on time, and he wouldn’t have jumped.
I spent a lot of time not understanding what had happened on my part, and, at the time, I accepted that I had made a mistake, I had dropped the ball, and as long as I never do it again, it will never be a problem again.
For two years I worried that I was not observant enough and that I didn’t care enough about what’s happening to act quicker or to notice quicker. And whenever I spoke to anyone, no one ever got anything to say about it, and I didn’t understand it. I was so confused and lost – that man could have lived if this hadn’t been a problem. And so that’s the worst thing, that has happened to me. But the reason I’m using this example isn’t because it’s the worst thing that happened to me, but because I do want people to understand that it’s a thing that can happen to them and it’s not their fault.

What is the best thing that has happened to you because of ADHD?

Self-acceptance. In the past, there were so many times where I was so tired of myself and I tried everything – I got every book that makes you more focused, or helps you be more organized… I got crystals – I’ve got a crystal for every ADHD symptom that I had, because I was desperate.
But now I have learnt to accept myself. And it’s been so nice and refreshing to not be constantly attempting to be a better person. I know that I try my best and I care about people and that’s all I can give. And that’s enough.