October is ADHD awareness month, ADHD stands for Attention Deficit Hyperactivity Disorder, which affects people’s behaviour. They can seem restless, can have trouble concentrating and be impulsive. Symptoms can be noticed at an early age or become more noticeable when children start school. But some people are not diagnosed until later in life.
To help raise awareness an amazing friend has written their story for me to share. I want to say a massive thank you to them for sharing their journey to a diagnosis aged 30, why they often felt they didn’t fit in and the validation that came with their diagnosis. Happy reading!
ADHD – late diagnosis, masking and self-discovery
I was diagnosed with ADHD at 30 years of age whilst working as a specialist nurse in a forensic setting. It didn’t come as a shock to me and if anything, it took a lot of weight off my shoulders. I finally had a reason for the way I was, the way I think, see and feel – not an excuse – but finally had insight and a label I could learn more about to understand who I am.
From a young age, I was seen as “hyperactive”, often described as “bouncing off the walls”, “stubborn”, “independent”, “quick to learn”, and would do only what ‘I’ wanted to do. An example of this was in ballet class, kitted out in my pretty pink tutu leotard with my knitted cardigan, tights and shoes looking like a sweet angel, but then getting bored and inpatient at the slow pace so would often end up outside the community centre hanging upside down on the monkey bars before the end of class or another one would be deciding I wanted to be a nodding dog in the backseat of my auntie’s car and refusing to come down off the passenger shelf, no matter how much the police tried to coax me down.
My family often bring these stories up and whilst I can laugh about it now I do wonder if ADHD in girls was recognised more when I was younger, would my life up to this point have been different? Could it have made it worse having the label and stigma attached to me? Would I have used it to my advantage to get away with things OR would it have helped me understand who I am earlier, would it have given me the key to access the right help, resources and understanding to help me redirect my focus and prevent the skill I mastered called masking?
Masking is a term used when someone hides away and puts on a front to fit in and, without realising I have been doing this for years and this has been a big barrier in coming to terms with my diagnosis. I am fine with having ADHD, but the struggle I have is knowing who is the real me? I couldn’t tell you what my favourite film is or my favourite colour or even what I wanted to be when I grew up. I have masked for so long that I don’t know my real identity. I know I like certain things but always question if I actually like it or if I like it because someone else does.
So how did I end up being diagnosed?
I have always jokingly been labelled as hyperactive and the crazy/mad one by friends and family. I am the loud, outspoken one in the group, who will do silly things to make others laugh and feel accepted. Many probably thought I wasn’t very bright as I always acted that way as even though I gave a sense of confidence and probably arrogance, I have always been riddled with self-doubt, imposter syndrome, constantly worrying about people’s opinion on me so I have always people pleased. I love to be a part of the action but not the main character unless it’s blended and shared with others but no one would know that with the front I put on, my mask is confidence and my saying has always been “fake it ‘til you make it” – because that’s what I have always been doing.
After leaving school at 17, I navigated my way through a variety of jobs working within finance and payroll. I had no idea of what I wanted to do but found I was good at customer service and problem solving, and even though I had a D in Maths as I didn’t click with the teacher, I really enjoyed real life maths, taxes, payroll and helping others. I decided I wanted to achieve more when I realised the income in the roles I was doing wasn’t great so decided to go back to education. I wanted to be an accountant but I didn’t get my Maths so I found myself on a BTEC National Diploma in Health and Social Care. Whilst doing this I also worked to pay for the life I had created working full time so I would go to college 9am-4pm and then straight to work 5pm – 10pm Monday to Friday. I also decided to fly over to America to work in a summer camp for people with learning disabilities and loved it as it was close to my heart having family with a learning disability, so I continued with the BTEC over the next 2 years in college.
Once I completed my college course, still not knowing what career I wanted to do, I took a job as a Finance Officer within the public sector. I quickly got promoted within the department and found the job boring but ok. I had both my children whilst at this job and when returning from my second maternity leave, I was moved to another part of the service due to restructures because our building was closing. This meant my job role changed significantly, and I did not enjoy the new role. I realised I wanted more from life and to make my family proud so found myself applying for a specialist nursing degree after finding out they did this in my local University. I still really wanted to do an accountancy degree, but just could not afford this with a family and house to pay for, and the nursing degree had a bursary attached to it which made things a lot easier.
The three years of my degree was hard, REALLY HARD. I failed my first-year end of year exam twice. It was a general nursing exam and I struggled with taking the information in and retaining it. I was referred to be assessed for dyslexia and got diagnosed quite quickly, they focused a lot on my lack of attention and focus. I was given a 1:1 support to meet up and scraped through and passed my degree with a 2:2 with the help and resources that came with the dyslexia diagnosis. Since being diagnosed with ADHD I do question the dyslexia diagnosis as I have never had any issues with reading and never struggled with writing in English or Welsh. I haven’t formally questioned it although no longer acknowledge it as I do not think it is relevant since the ADHD diagnosis.
So fast forward to my diagnosis…..
I was working as a specialist nurse in a forensic setting and as part of the role, I would complete ADHD assessments. I often joked that I ticked every box with yup that’s me, that’s me, that’s me as I made my way down the assessment list and one day I asked my manager if she thought I had ADHD. I can’t repeat her actual colourful words, but it was basically, ‘Oh yes! Did you really need to ask me this?’ haha.
This prompted me to take it more seriously and investigate what I could do to explore this further. I am not the type to go to the doctors and ask for help as it would look like I’m failing and haven’t “got my shit” together so it would look bad on me. Little did I know this is another string attached to ADHD. Another factor was feeling I wouldn’t be believed and as our doctor was the family one, would feel embarrassed so would rather not get help than face them to bring this up. Fortunately, I had opted into health insurance with my job and found out I could use this to go privately to seek a diagnosis. So I found a clinic and made my appointment, filled in some questionnaires before the day and had to take a family member with me to the appointment, I decided to take my Mam.
I can’t remember much about the appointment, just that it was long and I needed several bathroom breaks so I could get up and move around. My poor Mam left crying and apologising as the psychiatrist informed her that it’s not ‘just the way she is’, this is ADHD. I left that day with a rough idea of the outcome as he had given a summary overview and recommendation of certain medication but that the report would be sent to me and my GP. I left the clinic with so many emotions. I felt sad and anxious of what this meant and how it may affect me personally, my job, my life with a label. I was also happy and relieved with a massive weight off my shoulders that I had just had validation for so many things that never made sense. It also made me start to question who am I? Can I pull the mask down that’s been up for so long or would people think I was ‘putting it on’ if they saw the real me and blaming the diagnosis for an excuse to be like the unmasked version of myself? I had a lot to process and to reassure my Mam that she did nothing wrong, she had given me every opportunity in life and I was thankful she was my Mam.
I left that clinic with instructions to contact my GP and request a mental health appointment which happened within 28 days. The first appointment seemed pointless as it was more of an introduction to mental health and why I wanted to see them, it felt awkward for me and the nurse as she had the report from the private assessment and knew I had to be seen by the psychiatrist to access the correct treatments but I understand they have procedure to follow.
I finally got to see the psychiatrist, it may have been a month or so later and I was started on some medication after going through my story, though not the medication recommended by the assessor. This medication did nothing to help me, I didn’t feel any different. At my review twelve months later I saw a different younger doctor. I think on a placement as part of their training. I again had to explain my whole story again. They increased the medication rather than changing this. I found this very frustrating. I was working with individuals on ADHD medication and could see the difference the right medication made and knew I needed the one the assessing doctor had suggested but did not want to voice this as my mind was telling me they’d see me as a drug seeker and not genuine. So I kept my mouth shut and tried the increase.
Another twelve months went by, and I went for my next review and was seen by yet another doctor. After once again going through my full story I finally spoke up, said the medication was not helping, increasing the dosage was pointless and there had been no benefit and I wanted to try the medication suggested by the doctor who had assessed me. The doctor conducting the review scurried off to speak to my psychiatrist but came back a little while later with what felt like a reluctant yes and a prescription. During the time they had gone to speak to my main psychiatrist my mind was in full panic that they were going to label me a drug seeker and it would be in my notes, this is the joy of overthinking with ADHD. I also found it really frustrating seeing a different doctor each time I went and having to repeat my story over an over. I sometimes felt it was like they were testing me to see if I really did have ADHD and struggled or if I wasn’t important enough to see my psychiatrist and was being fobbed off by more junior doctors. I understand that junior doctors need to learn and develop but I just wanted answers and some help.
With the new medication everything changed. Before this my sleep pattern was erratic with broken sleep of two hours at a time and falling asleep was so difficult. Within a few days the new medication had kicked in and I slept for NINE HOURS STRAIGHT!! Waking up from this was not pleasant but over the following weeks I began sleeping 6 to 7 hours on a regular basis. My concentration also improved; I would still appear the bouncy excitable me, but I could reign it in when needed. On my next review I saw my main psychiatrist and was pleased to say how it was helping. But a comment that will remain with me, I cannot remember who said it but somewhere along this journey I was told that people “usually grow out of ADHD”. This comment struck me hard, whilst I have learnt techniques to help manage my ADHD better, and have my whole life through masking, this comment hurt and I wondered how much misunderstanding of ADHD remains. I also feel sometimes that people do not believe that medication makes much difference, whilst it may not always look like it on the outside, the difference it makes to my concentration and focus is incredible, and it can also stop me shutting down so easily, something that can happen when I become overstimulated and overwhelmed.
This is something I wish more people would realise about ADHD, it’s not just about being hyperactive, when I am not on medication my brain is constantly on the go, overthinking, focusing on the wrong things, going down rabbit holes, it’s like a constant party in my head. Even on medication I get good days and bad days depending on how busy I’ve been, who I am around and how much I can control my environment. I am learning more about what I need all the time, but speaking up for what I need is a whole other battle and blog post.
It has now been nine years since my diagnosis, and yes it has been a busy and bumpy life with many big events throughout, but I am proud with where I have ended up. I am still learning to navigate my journey with ADHD but I have an amazing husband, we have been together since high school, two bright and active teenagers, two crazy dogs, a lovely home and I am doing very well in my career. The mask is still there most of the time in order to help me ‘fit in’, and I still struggle with my self-confidence and imposter syndrome but I am learning more and more about the real me and until I learn enough about her I will stick by my phrase and ‘fake it ‘til I make it’ as it’s got me this far!
Fighting Fit 