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Chant Joseph: How I Finally Got Diagnosed with ADHD After Years of Misdiagnosis and Masking
ADHD (or attention deficit hyperactivity disorder) is a condition that affects a person’s behaviour and ability to concentrate. It’s thought to affect up to 1.5 million people in the UK and is commonly perceived as a disorder that primarily affects white, male children.
This is, of course, an incorrect assumption. While diagnosis rates among boys and men tend to be higher than those among girls (12.9% compared to 4.9%), women with ADHD – and in particular, Black women – often struggle to receive a diagnosis, either because they don’t see themselves represented and therefore don’t seek the help they need, or because they’re misdiagnosed with another condition altogether due to the way ADHD commonly presents in women.
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Now, she’s leading a new campaign by the learning support platform Cognassist called Undiagnosed + Underresearched, which aims to shine a light on the number of women and people of colour who live with undiagnosed learning differences due to a lack of research and representation in research into neurodiversity.
To find out more, ishonest sat down with Joseph to chat about her experiences with ADHD, and what changes she’d like to see in the future. Here’s what she had to say.
How did you end up being diagnosed with ADHD?
I had struggled with concentration issues and stuff like that while growing up, and when I got to university that was misdiagnosed as depression. So, I got put on antidepressants and stuff like that, but I was still finding things kind of difficult.
I was doing a lot of masking – a lot of women with ADHD tend to mask their symptoms – and I would use extracurricular, more creative projects as a distraction from the fact that I really struggled in a traditional academic setting.
However, everything kind of came crumbling down when I graduated and went into work because I wasn’t able to hide that I was struggling anymore.
Over the years I’d managed to learn a lot about ADHD and stuff from being online and reading about other Black women’s experiences, and from there I did a bit of extra research by doing questionnaires and the surveys on the NHS website to see if they applied to me, which they really, really, really did.
However, by the time the diagnosis was official I’d actually ended up quitting my job because I found it so difficult and couldn’t concentrate. I’ve basically been freelance ever since, and I got my diagnosis shortly after I quit.
Why do you think it took you so long to be diagnosed? And what impact has your late diagnosis had on you?
I think for a lot of Black women, when we do show symptoms, they tend not to be taken as seriously or are misdiagnosed.
I just think there’s a huge issue around [Black women] never really being believed. And that’s like beyond any issues to do with neurodiversity – in general, Black women’s pain is never believed, our symptoms are never believed, and we really have to advocate hard for ourselves in the medical field, because a lot of time people just don’t take us seriously.
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For me, there was definitely a lot of masking (something a lot of women with ADHD do to hide their symptoms) and making sure that if I didn’t shine in an academic sense, or if I was struggling in an academic sense, I had other things that offset that, so it seemed like I was OK or doing well, but actually I found studying very difficult. So that was how I tried to hide a lot of the issues I was experiencing at university and school.
What did getting a diagnosis mean to you?
It made me so much more aware of how my brain works. Now I feel a lot more aware of my body, I’m not forcing myself to do things that I know I can’t do and I’m developing systems and habits that work for my brain.
Now, instead of forcing myself to do something and telling myself I’m not working hard enough or being diligent enough, I’m able to tell myself, ‘Actually, this is something that you really struggle with, so what are the alternatives here?’ And that’s the most transformative thing getting my diagnosis has done for me.
What impact has the lack of inclusivity in ADHD research had on your experience?
I think quite a huge one actually, especially when it comes things like medication. I had to go private to do all of my ADHD testing and medication and stuff like that, and with a lot of the medication there’s not a lot of research into how it affects Black and brown people, so I paid a lot of money to do a DNA test to help me find a really good medication that would actually work for me.
And it’s unbelievable because even when they give you your DNA report and they talk you through everything that’s in there and what you can and can’t take, so much of it is based on a white person (for example, it’ll say ‘on average white people respond to it like this, and then Black and brown people will sometimes have it but sometimes won’t’).
So, it’s just like this huge sort of Russian roulette of what’s going to work and what’s not going to work. And I think for me that’s one of the biggest issues I’ve had – the lack of research, and not really being believed.
People think that either you’re lying because you’re an overachiever, or they say ADHD is a trend now, everyone has ADHD. And stuff like that is really, really frustrating because it’s only since people from more diverse backgrounds have started to be vocal about their experiences that I’ve seen so much denial.
What do you want to see change?
If you, or someone you know, is struggling with their mental health, you can find support and resources on the mental health charity Mind’s website and NHS Every Mind Matters, or access the NHS’s list of mental health services.
If you are struggling with your mental health as a result of loneliness, you can also ask your GP for a referral to NHS Talking Therapies, or you can self-refer.
For confidential support, you can also call the Samaritans in the UK on 116 123 or email jo@samaritans.org.