My ADHD Story
My ADHD Story
Due to ADHD Amy Coaching having lived experience as a big contributing element to providing support and raising awareness for those with ADHD, I thought it would be a good idea to share my own lived experience. Now it is quite a lengthy post so maybe go and grab a cup of tea or your beverage of choice and get comfortable. I will go over my life pre and post diagnosis and what life is like now 2 years after being diagnosed.
Life before diagnosis…
So, for those of you who are not aware, undiagnosed ADHD has an extremely negative impact on an individual and when I look back on my life before I was diagnosed it still pains me to remember how I felt.
Undiagnosed ADHD comes at a cost, and I don’t just mean the debt that undiagnosed ADHD caused for me either. Not only did it impact me with financial costs, but it caused extreme costs to my mental and physical health.
The debt that I got into is something I can now see was in fact my undiagnosed ADHD as now I am diagnosed I am better able to manage my finances in some ways, however this is still something I am really trying to still learn how to manage. However, before my diagnosis I would end up having days off work due to what I realise now was ADHD burnout. Also, the problem with me trying to push past it was that then this would lead to complete burnout where I would then have weeks and weeks off work. This time off work would not always be paid for which would mean I would have to use my credit cards (side note: someone with undiagnosed ADHD getting a credit card was never going to end well was it?). Not only did my inability to work cause a mountain of debt but put this in combination with ADHD impulsivity and a binge eating disorder and I was consistently spending roughly £15 every day on food during lockdown. I realised the other day that no one talks about the financial cost of a binge eating disorder, I was looking at a monthly cost on food of at least £450 a month (this didn’t include half the weekly food shop cost that I would have as well due to hiding my bingeing from my partner for months and months).
The mental cost of undiagnosed ADHD is a brutal one and one that I am probably still learning to accept now. A life of anxiety, depression, eating disorders, body dysmorphia, suicidal ideation, and overall that constant feeling of just being able to survive through life and thinking if this is what life is I don’t want to live it. Undiagnosed ADHD meant I would get into a cycle of reaching complete burnout every few years and I would have no idea that this is what it was. The symptoms of crippling anxiety, low mood and suicidal ideation just meant I would be recommended going back to therapy and to go back on anti-depressants. I reached complete burnout at the age of 15, 17, 20 and again at 23, and each time it would be worse, and I would stay in that state of complete burnout longer and longer, until when I was 23 (during lockdown) even the highest dose of anti-depressants and a different type of therapy still didn’t work.
Being misdiagnosed over and over with anxiety and depression had an impact also. When you are diagnosed with this and given medication and recommended therapy to try and this doesn’t work, well, what do you do? You blame yourself of course. I would always think to myself this should be working for me, the doctor said I have anxiety and depression so why isn’t the medication and therapy working? I must be doing something wrong. I must not be trying hard enough. It must be my fault.
The theme of constant self-blame runs deep for a lot of people with undiagnosed ADHD due to so many reasons. The constant level of self-awareness that you are different to others around you growing up, yet you are so desperate to fit in so you mask, people please and do whatever it takes to fit in and be accepted. However, this acceptance from others never feels real when you do experience it because you are neglecting your needs, your wants and hiding who you actually are. Therefore, others around you aren’t accepting you they are accepting this persona you have made and designed perfectly to fit each and every setting you find yourself in. Whether it be a certain group of friends at school or later if life the different places of work you find yourself in. So, what do you do when you are trying so hard to fit in and find yourself not being able to do the things that is expected of you or what others around you are able to do? Why blame yourself of course.
I remember always being able to do well in school and education until the age of being 12 or 13 when now I realise my hormones accelerated my symptoms of ADHD. I went from being predicted A’s and getting the gifted and talented award in both Year 7 and Year 9 to then not even being able to focus on the simplest of task in school. I went from being able to enjoy my homework, have it handed in on time and staying on top of my work until I just… couldn’t. Also, this being paired with being bullied in school, with the most common names being assigned to me to doing well in school, meant my quality of work and grades decreased. I figured that if I’m ever going to fit in then I can’t be clever, and the issue was that when I started to do this it worked. I got contacts, I started to wear makeup and change my whole appearance including being so obsessed with loosing weight that it developed into an eating disorder. When I think of my younger self it does sadden me still how this is when my body dysmorphia and lack of self confidence with both my body and who I am as a person started. When you are bullied you think there is something wrong with you, obviously now I know this is not the case but as a 12-year-old girl this is what you believe. Then when you change everything about you and the bullying subsides of course this will just negatively reinforce these beliefs.
Education was always an issue for me from the age of 13 when I was no longer able to manage my symptoms, which I now know were ADHD. I realise now that I excelled in the more creative topics such as art, textiles, and food tech. Unfortunately, due to others around me I had the warped view that these weren’t academic enough and I needed to choose more academic topics, so I picked Geography and History, to which I got no enjoyment from. Therefore, if a child with ADHD is being made to do something they find boring and isn’t fulfilling their creative outlet needs, well queue the excessive talking in class and lack of focus. This happened again at college when the only topic I was able to engage in was Psychology, which I think was due to the combination of this being something that really interests me, as well as having such an incredibly fun and engaging teacher. It got to the point where I had to drop out after 5 months or so as I was struggling so much, but back then I couldn’t figure out why I found this all so overwhelming. I just remember thinking why is it all my friends do this, but I can’t?
The same thing happened with work, and I managed to get through eight jobs in the space of 10 years. This was due to loosing interest, not being able to cope with the retail-based work environment, and the constant masking leading to a cycle of burnout. I was unaware of how much my symptoms of ADHD was impacting my ability to work. I was forgetful, easily overwhelmed, disorganised, unfocused, had trouble with time management, the list goes on.
Even at home I couldn’t face tidying my room, putting a load of washing on, and other simple tasks that is required of you when you are becoming an adult and need to take care of yourself. I was gifted and talented at school so why couldn’t I just remember to do the washing up? Even if I did see it and remember that it needed doing, why was it something that was so overwhelming to me?
When you are having these thoughts regularly day to day getting excessively worse and more frequent as the years go on, you develop an extreme level of self-criticism that has a massive impact on your life. Also, pairing this with a binge eating disorder during lockdown and the weight gain that was caused by it, this makes you think extreme negative thoughts of your body image on top of those you are experiencing about who you are as a person. The physical impact of undiagnosed ADHD may not be as debilitating as the mental impacts, but they are still there. Now I know my brain was craving dopamine which is why I developed a binge eating disorder during lockdown. This led me to put on six stone in eighteen months due to daily binges and going from doing twenty thousand steps a day at work to spending my days sitting on the sofa. The physical impact of putting on this amount of weight resulted in my joint pain increasing, my digestion being so sensitive and stretch marks that looked like I had been pregnant. As well as these changes physically, I would experience migraines due to stress and being overwhelmed, and lack of sleep due to insomnia.
When I look back on what my life used to be like and feel like prior to being diagnosed, the best way I can describe what it was like is that I was surviving not thriving. I was not living I was just scraping by just waiting for things to get bad again and the burnout to kick in as it always did. I was barely getting by mentally, physically, and financially. I remember thinking to myself if this is what life is like, then why would anyone want to live it? Constantly feeling like I was on the edge of a knife, knowing that my ability to keep going despite feeling like this was running thin. This is the impact of undiagnosed ADHD, and this is why a diagnosis is so important. I still remember to this day exactly where I was when I saw my first TikTok video about ADHD, and I had my lightbulb moment of clarity and understanding that I have always needed.
My Diagnosis Journey
I can still remember lying in bed in the flat I was living in at the time. My brain wouldn’t switch off and rather than tossing and turning all night I just gave up to doom scroll on social media. I came across a video which started by a woman saying, “It’s not ADHD I would have seen the signs” and then she acted out these five or six symptoms. I remember thinking to myself that’s funny I do those things all the time and then liked the video and carried on doom scrolling. Then due to TikTok sending you more of similar content once you start liking something, another video by Katie Sue popped up, which included the same phrase of “It’s not ADHD I would have seen the signs”. Again, I thought to myself how strange I do all those things again when the video showed me a different five or six symptoms that are present in those with ADHD. I liked this video and then the third video popped up, which is the one that made me really start to think about ADHD as a possibility. This video basically went through this woman spending her life being told she has depression and anxiety, as well as other conditions such as eating disorders and body dysmorphia. She went on to mention about how the therapy never seemed to work properly and the medication never fully worked until one day the anti-depressants had no positive impact at all. I remember sitting there thinking this woman on TikTok had just described the past 13 years of my life in a 30 second video. I also thought but ADHD can’t be what is wrong with me, as I had grown up around the misconception of it being an excuse for naughty children specifically little boys that haven’t had proper discipline. Oh, how I have come to learn this is such a dangerous misconception of ADHD.
I then spent the rest of the night researching this new topic I have discovered until I realised it was 6am due to the light seeping through a tiny little gap in the bedroom curtains. I realise it now but I essentially hyper-focused on the topic of ADHD, which I know now I am not the only one who has done this. I had watched all the videos from Katie Sue and found other accounts taking about the symptoms of ADHD, like the amazing account by Tara Elizabeth, which would mention all these symptoms and I would relate to every single one. I just remember thinking to myself surely this cannot be it after all this time of feeling like something isn’t right, that it was ADHD. I did a couple of the ADHD questionnaires online and all of them came up on the higher end of ADHD being a possibility, to which I also remember being in disbelief that these symptoms are ADHD related.
When I told my mum over the phone that I think I have ADHD, to which she started laughing not realising I was being serious. Like me she had the misconception of the stereotypical ADHD and it not being real, however my night of hyper-focus changed my outlook on this of course. After I explained it to her more she did start to see where I was coming from and did have a look online about it herself to which she could see the similarities. She agreed with me wanting to go to my GP about this, so I booked myself an appointment over the phone. I continued to hyperfocus on this topic and came prepared to my phone call with the GP, having written down notes of symptoms I experience thinking I would have to almost present a sales pitch for him to believe me. To my surprise he asked to see me in person and for me to bring in this list of symptoms, as well as continuing to research it myself to gain more understanding. So, a week later I went to the appointment with the GP to see him face to face and he listened to what I thought about me possibly having ADHD and asked if he could make a copy of the list I had written of my symptoms. He asked about my mental health history and looked over my notes to see the extent of the different mental health conditions I had been diagnosed with over the years. He asked about my family dynamic, my jobs over the years, as well as how I was feeling now. I got emotional talking about the difficulties I had faced for the past 13 years, as well as the extremely dark place I was feeling that I was currently in, which meant I was unable to work, study and most days even get out of bed. He then sat back and said something that I never thought I would here… he said sorry. I think he registered my confusion in the silence I responded with, and he went on to say he is sorry that this was never noticed sooner. He explained the research previously for ADHD, especially ADHD in women, has not been present enough for the correct knowledge to be known about this topic. Also, he said that he is almost certain that I did in fact have ADHD and wanted to refer me to get an assessment and he will send the letter off and call me in a week once he has heard back about the waiting time to keep me informed. I went home after my appointment and explained it all to my mum over the phone and again to my partner when he got home from work. My mum explained that she had been looking into it more and can see the symptoms in me growing up as well as me today.
A week later I got the phone call from the GP confirming he had heard back about the referral being received and has been informed that the current waiting time is currently 2 years. 2 years… 2 more years of this? I broke down in tears on the phone and he apologised again for there being such a long wait and listed of some resources that could be beneficial to me in the meantime. I got off the phone and couldn’t stop crying. I could not cope with another 2 years of feeling like this and I just thought to myself I won’t make it this long; I can’t live another 2 years of this. I rung up my mum in tears and told her about the 2 years I would need to wait that I had just been told about, panicking about not being able to work or study. I told her that I don’t know how I can do at least another 2 more years of this. She calmed me down, then told me to have a look online at the cost of a private assessment as she would pay for me to go private. She said that I need to get this assessment and get the right help, so it needs to be done and she will be paying for it. Still to this day writing about my diagnosis I am so grateful to her for paying to go private as I feel that I can confidently say I am not sure if I would still be here today if I had been made to wait the 2 years to have an assessment. This is the harsh and very real reality of someone with suspected ADHD being told a 2 year wait when they are feeling like their world is crashing and crumbling. At the time of me writing this in Southampton the waiting list I am having to tell my patients is 6 years and Psychiatry-UK have announced that they are needed to pause taking on right to choose referrals from GPs for right to choose. Sadly, this means that hope of someone having to wait the 12-18 months rather than 6 years is no longer something that can be offered, which is a very scary thought.
Life After Diagnosis
Now, two years on after getting my ADHD diagnosis, I have achieved more in the last 18 months than what I have my whole life, and I finally feel like I am thriving and not just surviving. I started my first job in mental health, passed my driving test first time and got my first car, went to my first solo concert, went on my first solo holiday, got my first tattoo, graduating university and got an upper second in my psychology degree, as well as starting the gym and running. However, above all, I started putting myself first, stopped being a people pleaser, and started setting healthy boundaries.
Of course, I do still struggle with my ADHD sometimes, however it is something that no longer feels crippling every single day, I am now able to manage my symptoms better. This in combination with getting to help others in the same place I was in previously, is why I decided to start by own ADHD coaching business. I wanted to put all the plans my amazingly creative brain has and help those with ADHD on a wider level, as well as raising awareness so better understanding and support can be achieved.
My biggest message to anyone who was in the same place that I was in 2 years ago would be that it is possible to live life with ADHD. I have learned so many self help tools and strategies and want to use them to help others. I have previously and am still currently providing goal focused 121 and group support, I have done A LOT of my own research, I also listen to the lived of experience of others as well as using my own, and I consistently use what I learned from my psychology: counselling and mental health degree. All of these contributing factors has led to great feedback from the individuals I have helped, as well as others who have benefited from my educational presentations and materials. My passion for helping those with ADHD, both on the waiting list for an assessment and who have a diagnosis, is at the heart of everything I do.
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