Today is IDPD (International Day of Persons with Disabilities), and whilst I never intended to share anything personal, I attended an event earlier which reminded me of the importance of opening up and sharing our stories. You never know who you could be helping – either to better understand the experiences of others, or to feel less alone. Whichever camp you fall in to, I appreciate you taking the time to hear my story.

Back in September, I was diagnosed with moderate-severe ADHD, after years and years of battling crippling anxiety and OCD, and to be honest, just years and years of struggle. Without giving you my life story, the notion that I have struggled my whole life is one that so many people find hard to comprehend, and a key driver in my decision to speak my truth today. I’m outwardly confident, smart and seem highly capable; I’m articulate, driven and hugely passionate. I have a successful career, great relationships and ostensibly, the world at my feet. The reality for me, however, for as long as I can remember, has felt very different. 

It is only since my diagnosis that I have an explanation for the extremity and intensity of emotions (hello emotional dysregulation) I’ve felt my whole life. It is only since my diagnosis that I’ve learnt it’s not the typical experience to go into every single interaction with anyone of authority (for example my boss) assuming I’m about to get into a lot of trouble, whilst knowing full well that I’ve done nothing to be in trouble for. It’s completely exhausting and means a lot of my work interactions fill me with dread, regardless of the topic of the meeting or the nature of the conversation. It means I wake up worried every single day I have meetings, which in my role, is all day most days. It’s actually got a name: rejection sensitive dysphoria. It’s only since my diagnosis that I have an explanation for the ‘boom or bust’ nature of my energy levels; I literally do not know what it is to be consistent with ANYTHING, no matter how hard I’ve tried. ADHD makes it virtually impossible to regulate my energy levels naturally, so I need to ensure that I carve out down time, and carefully manage my schedule, to ensure I don’t burn out every few weeks. The reality is though, that I burn out quite regularly, and notice it happening more and more frequently, the more senior I get in my career. It’s only since my diagnosis that I’ve finally realised I’m not ‘a bad person’, something which I’ve had zero evidence to support but yet something I’ve felt my entire life. Another weird, but awful symptom of ADHD: painfully low self-esteem. It’s only since my diagnosis that I’ve accepted that I’m not incompetent at life, it just presents considerably more challenges for me than it does for my neurotypical counterparts. It’s only since my diagnosis that I’ve been able to make sense of the suicidal thoughts and ideations that have plagued me since I was 13 or 14 years old, perpetuated by the nature of my OCD, which presents in intrusive thoughts and painful thought loops. That’s the darker side of ADHD that not many people speak about, and one I’ve barely shared with anyone except those very close to me, due to the fact I’m so ashamed. And on the topic of shame, it physically hurts my heart to think of the amount of shame I have carried my entire life, for something that isn’t my fault. 

I am not writing all of this for sympathy because the truth is, there are some weirdly wonderful aspects of ADHD which help me to thrive in the face of adversity, to foster connection with others incredibly easily, and to come up with brilliant ideas and solutions that others simply cannot see. It’s what makes me so empathic, curious, inclusive, passionate, hard-working, determined, and so, SO, committed to helping others. But I won’t lie and tell you it’s my ‘superpower’, as so many now describe it, because the truth is ADHD is incredibly exhausting, overwhelming and at times, traumatic. I have spent so much time grieving since my diagnosis, wondering how different my life would have been had I been diagnosed when I was younger. How many emotional breakdowns, mental health episodes and crisis’ could have been avoided? How much kinder I could have been to myself, if I hadn’t grown up and spent the first 34 years of my life thinking I was the worst person in the world. 

People think ADHD means you’re just a bit hyper and have a little trouble concentrating for long periods of time, and in my personal experience, it’s not a condition that’s taken particularly seriously. The reality is that it’s a disability that can affect every single aspect of a person’s life, and whilst I can’t speak for all of us, this is definitely true of my own experiences. Work, finances, studying, romantic and personal relationships, self-esteem, my relationship with food and body image, my mental and physical health (ADHD is closely linked to migraines – another condition I’ve suffered with since childhood), are all aspects of my own life which are impacted to one degree or another by my ADHD.  Despite all of that, my outlook is really positive. I’m about to start titration, which I’m hopeful about, since medication has been the turning point for many of my fellow ADHD-ers. I’m grateful to my incredible employer, and in particular my wonderful line manager, who not only supports but celebrates my neurodiversity. I’m grateful to my impossibly patient and supportive husband, without whom I honestly wouldn’t have coped this past few months. I’m unbelievably grateful to the network of neurodivergent folks I’ve met both online and through the ADHD colleague network at work: the power of engaging with others who have a similar lived experience cannot be overstated and has, in fact, been truly life-changing for me. And last but not least, I’m grateful to have a vast number of other privileges, which have enabled me to live the life I am very lucky to live – I know a lot of people with ADHD often end up under or unemployed, and have great difficulty just functioning in society. Whilst it doesn’t feel particularly easy for me, I am somewhat comforted by the fact I know things could be a lot worse, and I’m one of the luckier ones. 

So if I could ask you to take anything from my story it would be this – be curious about everyone. Never assume that you know the whole story. Looks can be deceiving. If you want to know – ask, so long as you’re respectful and prepared for someone not necessarily being ready to – or wanting to – share. But most of all, just be kind. Disability doesn’t look one particular way and in so many cases, including my own, might not look like anything at all. For more information on ADHD, there are some excellent resources on https://www.adhdfoundation.org.uk/ – or you can of course, just ask. #IDPD2022

Kimberley Inglis-Steel

Contact: kimberleyfsteel@me.com