Story time! This is one of my most frequently asked questions whether I get a direct message about it or if it’s a comment on my Youtube channel. It’s also noticeably one of the most asked questions on any online support group I have been in too. So, what is it like? To find out that your whole life you have been living with an undiagnosed mental health disorder. Well it’s big news! Important news. Life changing news. And pretty serious news regarding what the rest of your life is going to look like.
At what age were you diagnosed?
I was diagnosed at the age of 26. Up until this point I had been diagnosed for depression and anxiety disorders – which I later discovered were symptomatic of living a life with an undiagnosed disorder. I had trialled all sorts of medications only to have my anxiety or depression return. But I had nothing to be sad and anxious about.. or did I? A lot of events and situations I had happen in my life directly correlate with not having the tools to navigate ADHD. And being severely misunderstood by so many people. I never truly understood the root of my anxiety and depression until my diagnosis.
How did you go about getting diagnosed?
Well in my country (New Zealand) we have 2 options – you can go via the public health system and eventually be diagnosed for ‘free’ (that doesn’t include initial costs of GP visits). Or you can go the private route and pay to see a psychiatrist. Only a psychiatrist can diagnose you with ADHD and they are the only people who can prescribe ADHD medication.
For me, I suspected something was up when I was living with a flat mate (room/house mate) who has Aspergers. I related a lot to their struggles, I saw myself in them. I had a thought that my anxiety, insomnia and so many other problems must be something more. I just struggled my whole life – I could never figure out “What the big secret was that everyone else seemed to understand that I didn’t”. Am I stupid, lazy? I knew that wasn’t true – I tried so hard at everything only to fail over and over again. I couldn’t understand that when I tried as hard as anyone else, to keep having the same issues and feelings. I felt trapped in myself, unable to articulate my experience. It felt stupid to tell people I can’t bring myself to do the dishes, laundry. That I couldn’t push past the boredom monster in every job I had. That boredom of everything was literally painful. That failing and fear of failing was painful. Surely, everyone else must feel this way but was really good at hiding it, right? So why couldn’t I handle it.
I tried my best to explain this to my GP, that I suspected there was more too it. And he agreed that normally people don’t live like this, that it sounded like a disorder – but he was not qualified to tell me what or give his opinion, so he referred me to a public mental health service. There was a short wait of 1 week for me as I was put through as emergency assessment as I was quite unwell at the time.
I spent less than 5 minutes with the psychiatrist before he gave me his opinion. It needed to be investigated and go through a diagnosis process, but he wanted to trial me on stimulant medication for ADHD and see how I responded to it. And that was the day my whole world view changed.
The process from there was a psychological follow up, self assessment questionnaires. I had to provide my school reports from before the age of 12. And they phoned my Mum to ask what I was like as a child. Within 2 weeks we confirmed a diagnosis of ADHD inattentive type. And the stimulant medication was already helping me with my mood.
How did it feel to receive this diagnosis?
In truth, sad. It wasn’t that I was sad about the diagnosis per say – but that I had spent so many years feeling like a failure, that there must be something wrong with me, that I must have a uncaring and thoughtless personality. That my child hood could have been so different. Relationships with friends, family, co-workers. Would I have struggled less at school? Would I have been more successful at careers? There was definitely a grieving period for the “life that could have been”. I had a pretty defeated attitude about it initially.
But – at the same time, this was the best news I ever had. The most validating, uplifting and important news I could ever hear about myself. It meant all the things I believed about myself were never true. That I did care, that I did try, that I was smart, that I was doing the best I could with what I knew. I finally had the words for why I struggled with so many things. I have ADHD.
It also meant that I wasn’t alone any more. That there are people like me in the world. That other people go through what I have been through. That there was help, medication and services that are for people just like me. It was life changing and I am so very grateful to finally know. And also grateful for the care I received after my diagnosis, the after care was so invaluable into understanding myself. For the first time I felt justified and OK. That there was a reason for why I had to go through everything that I experienced up till that point.
Did you ever suspect you had ADHD?
No. Not really – and yes.. A friend once mentioned it to me in high school that I was a chatterbox, she knew someone who has ADD (what it was called at the time) and said I was just like them. Funnily enough this same friend was diagnosed with ADHD a year before me and had suggested she thought I was ADHD or ASD or similar because she related so much to me and I felt the same about her.
I always had an interest in psychology – I think I always had a strong desire to understand what it was that everyone else seemed to be able to do that I couldn’t. That I was painfully shy but a prolific talker in the right situation. That I had these bursts of what turned out to be hyperfocus for certain things but this abnormal disdain for anything that wasn’t interesting when everyone else managed to just “get on with it”. I knew there was something to it but never investigated it until I truly hit rock bottom.
What is it like taking stimulant medication?
My medication that I take every day is Ritalin (Methylphenidate). A very controversial medication in the eyes of those who don’t know much about it. But it’s been a life changer. My life before medication was like living in a fog cloud of forgetfulness, low-motivation and never ending struggle against myself. Now I have more focus, I hold my short term memory better, I can persist at tasks longer, my moods are generally better. I sleep better! It was like I now have these amazing goggles on that allow me to see through the fog cloud. It’s no cure, my ADHD is always there, but medication has reduced the symptoms of it to a more manageable place and I can have more of a life than I did before. It’s practically night and day.
How did the people around you respond to your diagnosis?
Let’s just say that people carry a lot of preconceived ideas of what they think ADHD is or what a person is like who has it. I’ve had reactions of out-right denial “ADHD isn’t real”, “Everyone is a little ADD sometimes” to “But that’s what we love about you”. People really don’t understand how debilitating the disorder can be and it affects every part of your waking life, your sleep and dreams too. It’s literally how a persons brain is wired, so naturally it impacts every part of your life. I feel like sometimes when I explain why I have done something and that it’s my ADHD that is the reasoning to my logic or actions, that I am making excuses. But I have felt so misunderstood for so long that I want people to understand that this is me giving explanation for why I do certain things, that some of it is impulsive, despite my best efforts. While still being accountable to my actions.
I’ve come up against a lot of walls regarding people thinking it’s only something children have or that I can’t have it because I am not “bouncing off the walls” – these things are very stigmatizing and it’s definitely frustrating navigating peoples opinions on something I have to live with every day.
The attitude towards mental health in society is the most exhausting part. The way I see it – it’s like not providing a wheel chair ramp into a building for someone who cannot walk and expecting them to use the stairs. We don’t expect that of visible disabilities. Because of the “high-functioning” nature of ADHD, people expect me to do very neuro-typical things all the time, as much as I try, that’s a big expectation to place on someone where they have so many mental obstacles in order to perform any task.
The stigma is at a point where I find it difficult to function in a world not really made to include me. I feel quite left behind in life and people have made a point of not trying to understand this. Luckily enough I have a supportive partner who has been there from the beginning. They know what I bring to the table and I really appreciate that. Now I have made it my mission to be an advocate for ADHD there is no reason for more people like myself to go through what I have, it’s unnecessary and people living with ADHD have SO much to offer if they were able to do so.
What is life like living with ADHD years after diagnosis?
In a lot of ways – it’s the same. For me, this is my normal. I don’t know any other way of being. Diagnosis just gave me a name for it and the information to understand why I do certain things, why I seem to struggle at really basic stuff that other people don’t have to worry about so much. I’ve also been able to change things about my environment and creating routines that are better suited to accommodating my life with ADHD.
But there are days I forget I have ADHD and then I am disheartened in a way that I remember this is forever. And that can be frustrating and honestly exhausting. Some days are better than others.
On the bright side of things, some days are amazing and I think ADHD can be an amazing thing to have because I can be so creative, innovative, caring, passionate, driven (hyper focus) and I think it makes me sensitive to other peoples struggles, I am humbled by them and I see the person in the mess, not the mess around the person. I relate greatly to how everyone’s pain and struggle is relative no matter how big or small. I’ve learned to laugh at myself and forgive myself. I have better conversations with myself. I’ve learned to use my ADHD to do amazing things, things I know I couldn’t do without it.
Just knowing has enabled me to be more who I wanted to be and finally achieve more of my dreams and get there with less self-doubt. Every day living with a mental health disorder is a challenge but I wouldn’t have it any other way. I’m learning every day to live alongside my brain not to be at war with it. I have become unapologetically more myself, no more pretending to be neuro-typical and forcing myself to be something that I am not. I am who I am and that’s OK!