Caribbean households are known for obscure nicknames. Growing up, mine was (and still is) ‘Longers’. My dad says I was given this name because it took me ages to start doing anything and I was so forgetful as a child. My parents being separated meant that I would move from house to house every weekend, spending some with my grandparents. Between these moves, I’d always forget my phone, keys, purses, clothes, devices. Halfway through driving home I’d inevitably remember some important item I’d left behind. Eventually my dad implemented a system of checking things before I left the house. He’d shout the item and I’d check it off my mental list. “PHONE?” “CHECK!” “KEYS?” “CHECK!” until I was certain I had everything.
At school, 50 minute lessons were torture. I didn’t misbehave but I was chatty, disruptive and loud. Teachers assumed I had issues at home and I was given counselling. At university, I was diagnosed and treated for depression but it didn’t solve my issues. At work, I couldn’t concentrate and managers berated me for making mistakes. I constantly asked myself why I couldn’t do my job, holding back tears every day. It’s only now, at 24, that I realise it was a sign of ADHD.
ADHD (attention deficit hyperactivity disorder) affects 1.5 million adults in the UK and is the most common behavioural disorder in the country. The gender health gap is at play here, too: just 4.9% of women will be diagnosed with ADHD in their lifetime, compared with 12.9% of men. Women and girls, socialised to assimilate, are likely to develop better coping mechanisms which help to mask the disorder. If they also happen to have depression and anxiety, it can often lead to misdiagnosis.
Lorraine Collins, a counsellor, psychotherapist and member of the British Association for Counselling and Psychotherapy, describes ADHD as “an automatic, unwilled tuning out.”
“It’s a kind of frustration around being present and struggling with remembering information,” Collins says. “It can be reading a page and then forgetting what you’ve read or finding it difficult to stay abreast with a conversation. If you feel yourself tuning out from life or from situations, that’s something to look for.”
The ADHD stereotype of young, white hyperactive boys is doubly damaging for Black women in particular who find it impossible to see themselves in the narrative. Failing to see themselves represented, they then hesitate to seek out adequate support.
Last autumn I spoke to my friend Stephanie Ozou, who is an ADHD advocate and career coach, about her diagnosis. Her emotional experience felt all too relatable to me. At the start of lockdown in March, I found it increasingly difficult to manage work tasks, so I decided to get an ADHD assessment.
The NHS says that you must display six or more symptoms (five if you’re an adult) to be diagnosed with ADHD. Due to long NHS waiting times, I opted to go private via the ADHD Centre. The assessment was expensive, costing £545; luckily my employer was kind enough to cover the cost. At this time, however, my mind was like a pinball machine without any controls: constant lights, information, actions and ideas but no motivation to execute them. By the time I received my assessment, I’d had to quit my job because I couldn’t function.
I’m not alone. This year, many other Black women have announced that they too have been diagnosed with ADHD. Tanya Compas, a youth worker and campaigner, was one of those diagnosed. “During the lockdown, I was reminded how much I can’t sit still and how easily distracted I am. I also get overwhelmed a lot, I laugh about it but I say I’m in a continuous state of being overwhelmed,” she tells me. “I saw people talk about ADHD online, especially yourself and Stephanie; it made me realise this is not just intrinsically me but it might actually be connected to the ADHD and then I got myself tested.”
Compas was relieved to receive her ADHD diagnosis but also felt resentment and anger that it took so long. “I think I was mourning for myself. When you go for the testing, you have to look back on your childhood experiences. I realised just how many times I’ve been failed and how many times I’ve been written off,” Compas adds. “Just knowing you have ADHD doesn’t stop it or help it heal. You have to look into lifestyle changes or medication and then you have to work with your own internalised ableism and ask yourself what does it mean to not be neurodiverse, and have to unpack that.”
Official figures in 2014 showed that Black women made up the highest percentage of people aged over 16 to screen positive for ADHD. Why? Collins points to the racial medical gap. “I think this is so important, and I’m seeing this more and more in my practice. Black women have been invisible in healthcare and that has left an imprint, so there was no safe place to really discuss ADHD,” Collins says. “For the majority of Black people needing therapy, why would you go to a place where you feel your language isn’t understood and you have to edit yourself?”
As well as a lack of access to Black therapists, Collins acknowledges the issues within the healthcare profession when it comes to diagnosing Black women. “I think the counselling and psychotherapy profession has a lot to answer for because they themselves were complicit in that racism and not wanting to see what was clearly mental distress or a psychological disturbance and I think that, in itself, has played a huge part as to why people weren’t coming forward,” she adds.
Knowing that Black women can find it difficult to get the support they need from healthcare, Collins insists they be proactive about their assessment. “It’s about using the resources that everybody has a right to, being seen and not suffering in silence. Go and see your GP and if they don’t listen to you, say ‘I want a second opinion’.”
Part of my inability to acknowledge my ADHD was because I believed myself to be something of a high achiever, taking part in extracurricular activities like youth parliament, cheerleading, drama school and public speaking. I was always a decorated student who was awarded for my confidence, leadership and drive. But I’ve since realised that so much of what I did externally was to make up for being academically average.
I’d spend endless hours in the library or at my desk, willing my brain to concentrate, but it just wouldn’t. Yet in other areas, such as leadership roles, advocacy and campaigns work, dance, drama and even music, I would excel.
I noticed that my social circles became smaller as I got older and my opportunities to meet new people were slim. The thought of having no close friends left me constantly anxious and propelled me to invest in my career. When trying to excel in a working world which is built to accommodate neurotypical minds began to fail me and I had no way to mask my insecurities, my world really started to crumble.
According to Psychology Today, ADHD can also impact your relationships due to lesser known symptoms such as rejection sensitivity dysphoria (extreme emotional sensitivity and pain triggered by rejection or criticism) or emotional dysregulation (an inability to control or regulate emotions). These occur when people have a strong emotional reaction to negative judgments, exclusion or criticism from others, sending them into a mental tailspin.
“ADHD shows up in relationships, it shows up in people not having the capacity to trust and insecure attachments,” Collins adds. “It shows up in people questioning, ‘Are you safe, are you going to stick around and tolerate me?’, feeling unsettled in your relationships and the need to move around. It can then lead to a sense of isolation, a feeling of being cut off or retreating back from the world, as you feel nobody understands.”
ADHD is so often painted in a negative light that many people fail to understand that it can be positive, too. “People with ADHD are doers, they get things done. But what they need is just a sense of organisation, you know, they have to find a structure and a way of sequence that works for [them],” says Collins. “It is important to keep things simple, instead of having to-do lists with 10 things, try a list with three clear things.”
She continues: “Talking and having support groups is really important for people with ADHD, it provides a fostering of your self-esteem and helps people realise there is nothing wrong with you, there is just a difference in your internal structure.”
Cynthia Silveira and Vivienne Isebor are cofounders of ADHD Babes, a support group for Black women and non-binary people with ADHD. The group has become a safe space for many of us who recently discovered our ADHD diagnosis. “If there’s a little Black child being a bit disruptive, no one is going to think they might have some sort of disability, they’re going to think they’re just naturally naughty and then they get punished instead of getting the help that they need,” Silveira tells me.
Though schools are important places for diagnosis, there also needs to be education within Black communities about ADHD and how it manifests in children. “I don’t think the generation before us really had that kind of language,” Isebor says. “We were told to just get on with it and not bother with accessing mental health services because of the mistreatment that we’ve had from them.”
She continues: “On the clinician side, Black women are definitely already under-diagnosed with depression, for example. When we talk about our difficulties, they’re not responded to as promptly as other races. I think that’s the same with the ADHD symptoms.”
According to a survey carried out by the National Attention Deficit Disorder Information and Support Service (ADDISS), 85% of child and adolescent psychiatrists and paediatricians in the UK believe that not treating childhood ADHD could lead to adult mental health problems such as depression and even suicide. Ninety percent said that it can lead to a variety of social problems, such as difficulties finding and keeping a job, and criminal behaviour. 2018 figures found that 30% of adult prisoners have ADHD and that having their condition treated earlier could have prevented their encounters with the justice system. Despite knowing all this, not enough is done to diagnose ADHD in Black children.
I am still processing my diagnosis. I am mourning the friendships and the relationships I’ve ruined due to my fear of rejection and inattentiveness, the jobs I’ve fumbled because of my restlessness and the great ideas I started and never finished because I didn’t have the willpower to see them through.
However, I’m realising all of the ways that ADHD has made me a great person who is fun to be around and never boring. ADHD has given me creative ideas and a fearless spirit that hasn’t let me down yet. I’m being forced to learn and do self-care in a new way, I’m listening to my body and being kinder to myself. I’ve carried so much self-hate and regret in my life but I’m also learning that I cannot ‘pretzel’ myself into a shape, as Dr Collins put it. I have to find what works for me and that’s okay.
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