Being Diagnosed Twice with ADHD
Artwork by Richard Kahwagi. Photos by Ian Parker and Belinda Amoah on Unsplash
According to the NHS website, attention deficit hyperactivity disorder (ADHD) is a condition that affects people's behaviour. People with ADHD can seem restless, may have trouble concentrating and may act on impulse.
Three major types of ADHD include the following:
Combined type. This is the most common type; this is characterised by impulsive and hyperactive behaviours as well as inattention and distractibility.
Impulsive/hyperactive type. This is the least common type; it’s characterised by impulsive and hyperactive behaviours without inattention and distractibility.
Inattentive and distractible type. This type is characterised predominately by inattention and distractibility without hyperactivity.
Source: https://www.hopkinsmedicine.org/health/conditions-and-diseases/adhdadd
How ADHD impacts my life is so complex because daily I question if an experience, especially when I am struggling is due to my ADHD, trauma, culture or just the essence of me being me. For example, just before my period is supposed to come, I experience PMS and over the years it has gotten worse and more evident. The NHS defines premenstrual syndrome (PMS) as the name for the symptoms women can experience in the weeks before their period. Most women have PMS at some point. You can get help if it affects your daily life. ‘I Am Paying Attention’ shared that “Symptoms of PMS can be amplified with ADHD and symptoms of ADHD can also be amplified during PMS.” They referenced Yoppie.com who explained that “the main reasons people with ADHD can experience worse symptoms at certain times during their cycle is because of the hormone oestrogen. Oestrogen is a sex hormone that is responsible for the development and regulation of the female reproductive system and secondary sex characteristics. Research has found that oestrogen can stimulate certain populations of dopamine receptors in the brain”. Dopamine is a type of neurotransmitter; our body makes it and our nervous systems use it to send messages between nerve cells. Dopamine allows us to regulate emotional responses and take action to achieve specific rewards. It’s responsible for feelings of pleasure and reward. Scientists have noticed that levels of dopamine are lower in people with ADHD than in those without it. I wonder if this is what has affected my PMS, or have I convinced myself that it is?
It was first suggested to me that I may have an “ADHD brain” by my therapist towards the end of a session. It came after she had suggested, like many people before in different ways, that I try not to overthink but instead relax and be still. I expressed my frustration at the fact that I had this time and time again and how I struggled to do this. After she suggested this, she advised me not to dwell on it too much. Thinking about it, this was such a comical thing to say to me as I did just that. I was at university at the time and went about getting an assessment.
My university has a department dedicated to supporting students with disabilities and specific learning difficulties. They could help with a range of medical and sensory conditions, autism, and mental health issues as well as learning difficulties. I booked an appointment and sat down with a student support advisor. I explained what my therapist had said. They then booked me in for a pre-assessment with a disability advisor. A thirty-minute conversation, where I needed to explain why I thought I had ADHD. I shared how I struggled with exams, note taking and revision. Once the disability advisor felt I qualified, I was booked in for a two-hour assessment with a specialist. I was tested on my reading, writing, memory and speech by going through a variety of tests. I was also asked about my experiences going through the education system and my family such as does anyone else have a learning difficulty? After a few weeks’ wait, I received a detailed report, most of which I did not understand. Towards the end it stated that I have ADHD with some indicators of dyspraxia. The NHS defines dyspraxia as a condition affecting physical coordination. It causes a child to perform less well than expected in daily activities for their age and appear to move clumsily.
I then returned to the disability advisor who read my report to assess what kind of support I would need. This included things such as more time in exams, having software to help me take notes and revise and having one-to-one study skills. This was all put into my Disabled Students’ Allowance (DSA) and sent off to Student Finance with my report as my evidence. The DSA is funding support available for most UK students. This is not extra money, but instead it pays for any additional support recommended in a need’s assessment. Such as the one-to-one study skills and specialist equipment I received. I completed my final year exercising the support put in place for me getting better grades in the modules which I found more challenging.
I was diagnosed again this year after my GP told me my university report might not be taken seriously. I found this to be the first barrier to getting the support I needed. My GP put me on the waiting list to get assessed as an adult for ADHD over a year ago. I am still on this waiting list which should not be a surprise considering the recent reports of five-year waiting lists. You must display six or more symptoms (five if you're an adult) to be diagnosed with ADHD under the NHS. A private assessment would be between £350 to £1100+. I was fortunate enough to be told about Psychiatry UK, I could receive an assessment for free by exercising my right to choose. This was rejected by my GP twice because I have advocated for myself and explained rejecting my right to choose was in fact illegal. Unfortunately, I was not the only one turning towards this, meaning there was some delay in getting my assessment by a few months. This summer I received my second ADHD diagnosis with the possibility of also being autistic. I currently await starting my medication and the process of finding the right balance within the next two weeks.
Put plainly, the barriers to accessing support that I experience fell into three areas. The first being getting a diagnosis through the NHS which is damn near impossible in general but even more so in a pandemic. With everyone online or over the phone, I struggled to wake up on time to book a same day appointment and would miss the call back which often came later than agreed.
Then, in my opinion because this condition is somewhat “all in the head” and the fact that I won’t die there wasn’t a sense of urgency. Because I didn’t need immediate medical attention and I wasn’t a danger to myself and those around me this was another cause for delay. Without exaggeration, it is hard to express when you have ADHD.
Lastly, it’s no secret that Black women aren’t taken seriously when it comes to expressing our health concerns. I’ve seen a few articles and many threads on Twitter discussing this very issue. I don’t doubt that healthcare professionals’ factor in that people need to experience pain to be taken seriously yet when Black women say we’re experiencing pain; it’s not taken very seriously at all, and I wasn’t taken very seriously at all either.
When it came to sharing my diagnosis with my family, I thought it was pointless. While living in Jamaica, my brother was labelled slow and constantly repeating whatever grade he was in. Back in the UK, he was diagnosed with dyslexia, but my family didn’t accept or support this diagnosis. I assumed my Jamaican family would respond with a similar lack of acceptance. My mother found out I had ADHD after seeing me read a book about women that have it. She didn’t really dismiss my confirmation which was surprising. The next day she said her church sister’s son had it, but she prayed for him and now it’s gone. She said she’d pray for me too. I’ve found my mother reflects the wider community to some extent, I think maybe it’s because we’re in the UK that makes them take things concerning mental health seriously for a second but as always when regarding things like this, I am told that I can unlearn it, outgrow it, or pray it away. Beyond that the common misconceptions a person with ADHD has been hurled at me, I’ve been told I’m lazy, lack concentration at times while at other times, I am too hyper and talkative. If only they knew I have the combined type.
In 2018, the BBC reported that “about 1.5 million adults in the UK have the condition, ADHD Action said, but only 120,000 are formally diagnosed.” Dr Louise Theodosiou, from the Royal College of Psychiatrists, said that "ADHD is connected with higher rates of suicide, depression and other mental health needs and untreated ADHD can also impact physical health." Just 4.9% of women will be diagnosed with ADHD in their lifetime, compared with 12.9% of men.
As a Black woman with ADHD, I see it as both a blessing and a curse, I go further to say attempting to get the help I need and deserve is also a blessing and a curse. The research was once focused on those who intersect between being young, white, and male. At 25, I am still young, but these aren’t groups which consider someone like me. Thankfully, more and more Black women are being diagnosed with ADHD and being open and honest about how it has affected them, and from there I found a community of people who are like me that understand me and validate me and my ADHD.
To find out more about ADHD (attention deficit hyperactivity disorder) visit: https://www.nhs.uk/conditions/attention-deficit-hyperactivity-disorder-adhd/
