It is ADHD awareness month and so I've gathered questions people have, and answered them in one big post.
It's going to be a helpful space because lots of people ask me questions about my ADHD journey. And, if you’re reading this following asking a question, thank you for asking me and helping me share my own reflection on it.
When did you realise you had ADHD?
Someone I know had their autism confirmed with diagnosis and so I started to read to learn more about it to walk the journey and support them.
As I was reading, I started to feel fireworks going off in my mind. But some of the elements didn’t fit me. I remember the moment I stumbled on a list that outlined how ADHD showed up on women. Every time I read a statement, I mentally ticked it. I could hear a ding in my mind going off and each time I ticked. The ding got louder……JACKPOT I thought at the end of the list.
For my whole life, I had been searching for ‘something’ as to why I couldn’t settle, and always felt like I could never be still or switch off. I knew unequivocally at that moment that I had ADHD. And, that I could call off the search as I’d finally found the answers I was searching for. Then I went down a rabbit hole, what I now know to be hyperfocus, researching it to be 100% sure. I wrote down so many examples from my own life before I reached out to the GP or told anyone my suspicions.
How did you get diagnosed?
As far as I know, depending on what healthcare is like in your area, there are three ways to get assessed.
There is the NHS referral, which can have a 1-3 year wait list. It is a total postcode lottery. You can go private but you then have to pay for the assessment, and all prescriptions forever. This is because most GPs won't accept private diagnosis and take on the medication expense, which is approx £70-150 a month depending on the meds and doses.
Finally, there is a route called Right To Choose. This is where you could ask your GP to refer you to either Psychiatry UK or ADHD 360. You pay for your assessment, but there is an agreement from the outset that the NHS would take back the responsibility for ongoing medication prescribing.
I was going to opt for the third route, but it turned out the NHS in Kent outsource all the assessments to Psychiatry UK. Therefore, I was joining the same queue, but as a full NHS funded patient. It took 7 months to get my assessment, which I was really lucky with, and then I had to wait from my Dec '21 diagnosis until April to start meds.
What was your experience of asking for a referral to be assessed?
I contacted the GP and got a phone triage appointment with the nurse. They asked me to explain why I felt I had ADHD. As soon as I started to speak, I got all flustered as I was trying to articulate it. The irony that your processing can trip you up in moments when you need it most - when I can be so articulate most of the time! I fumbled about a few things and started to add more. They cut over me saying ‘you've lived to 37. You're married. You've got a degree. You own a house and run a successful business. Why bother getting a diagnosis? Are you collecting a tick box?'
I felt like someone had winded me!
Somehow, I grabbed onto one of the 10s of possible answers flying through my mind in the momentary silence and clung to a physical health example.I stated that I had an addiction to coffee and that I ate to seek stimulation when I felt dysregulated or under-stimulated, essentially seeking a dopamine rush from food. I expressed concerns about my long-term health, as I worried about self-medicating in this manner for the rest of my life. It appeared that my frantic efforts to find a reason to be assessed had altered the course of the conversation. It was only when I moved the conversation to physical health that they agreed to refer me for assessment. Though they didn’t refer me correctly and it went through as a private referral rather than the NHS route. This delayed me getting into the queue for a month.
Did you tell people you thought you had ADHD or did you wait until you had a diagnosis?
Both! I had been talking it all through with Mark (my hubby) step by step and he has been my absolute rock on this journey. I spoke to my immediate family before I went to the GP and they were very supportive. They always have been.
And then I started to mention it to close friends - they were amazing. Lots of Whatsapp chats and phone calls and an eagerness to learn and understand. They asked me to send resources I was reading so they could get to know more. And then several friends who have ADHD, some I hadn’t known about until I shared my suspicions about myself. Those friendships just cemented in so many unspoken ways it has been rather magical.
Did everyone react in a positive and supportive way when you shared about ADHD?
In the majority, yes. But I want this post to be tender, open and honest about the journey and that includes some bumpy bits too. There have been some responses or lack of, which caught me by surprise.
Firstly, people often encounter well-meaning questions or comments that exhibit a considerable amount of prejudice. Mainly through lack of understanding about what ADHD is and particularly how it shows up in women. When you are choosing to share with someone, it is important to try and do this on a day when you feel most regulated. This is so you can handle anything that feels sticky or heavy the best you can. Hence writing posts like this, as I am on a mission to unpick and explain a comment or assumption that is imbued with stigma, stereotypes or prejudice as situations arise and raise awareness about what ADHD actually is. To disrupt and rewrite the narrative about ADHD in women.
And secondly, I reached a fork in the road with a friendship and I really didn't expect it. I'd been vulnerable and shared my a-ha moment in a message and a good friend did not respond or acknowledge it. It leaves you in a bit of a quagmire. Your ADHD brain just wants to know ‘why have they reacted like this’ and fill in the blanks as it doesn't like grey areas. But on the flip side, the power of knowing that your brain wants to seek the ‘but why’ and clarity, allows you to step back and intentionally create distance.
This is a transitional moment. What people thought they knew about you and what you know about yourself has changed. How you look back at your life now needs a complete reassessment because of this plot twist. You’re still the same person but you've truly just met yourself for the first time. You have a whole new lens to see yourself and life through. During moments of transition and transformation, intentionally surrendering to the void of silence is vital, where you expected reciprocation of the support and love you had poured in. To trust that empowerment and a deeper connection to self awaits you on the other side of holding the polarity of it all.
It has been an enlightening journey. There are always future versions of yourself yet to meet, regardless of your neuortype. Overall, what has been really special is a deepening of relationship with folk.
When you've opened yourself up so honestly and vulnerably in your self-reflection, held it tenderly, you allow the tears to flow, connect the dots, and finally translate the shared biographies. There has been a big part of softening around this diagnosis. And it has been a moment for so many new friendships with ADHD women. So many already in my life but you've just been able to seek each other out. There is almost a sixth sense with ADHD. We're so deeply intuitive that you can sense another ADHDer and you instantly have this knowing and root deep connections.
Why are you sharing your ADHD story publicly?
Nearly two months after I was diagnosed, I decided to share publicly that I had been diagnosed with ADHD because I know that I am in a privileged position to have a diagnosis.
I only got to this place because so many wonderful women before me stood in a place of visibility about it and helped me see this in myself. You can read more about it here. It was a truly humbling experience sharing this.
The chat on socials was wild. So many women shared that they had diagnosed themselves or were in the process of diagnosing themselves and thanked me for seeing them in the most vulnerable and authentic way. I didn’t really expect it to have the potent effect on me that it has ended up doing, with folk quietly mentioning they thought they have ADHD or asking questions about my experience to help them ground their next move on their journey. And these conversations have lead to me writing this post. I wanted to create a post to signpost people about the journey I've been on because I receive many questions with a common theme.
Isn’t it trendy to be diagnosed with ADHD? Everyone seems to be sharing they have just been diagnosed.
Oft! Well, the trendline of diagnosing women with ADHD, especially in the last few years, is certainly increasing. If awareness indicates a trend rather than a trendiness, then that must be a good thing. Because it was never considered possible for a generation of 'lost girls' to have ADHD. Men wrote the assessment criteria about boys - let's raise a glass to patriarchy once again.
When I was at school in the 90s, doctors nearly always diagnosed boys. This is because girls exhibit ADHD in a way that is so different from boys. Girls observe curiously and learn to conceal behaviors that society deems unacceptable for them to emulate, given the constructed notions of gender and femininity.
What was ADHD like for you when you were a child?
In my case, I would drift off into daydreams, with wildly hyperactive thoughts. My racing mind had a restlessness fueled by the limitless potential I had imagined but was being limited by my situation at that moment. I would always be 'doing' - swimming, playing music, crafting, working a Saturday job. My parents supported me to do so many things, and it kept me occupied from waking up to falling asleep.
My Grandad used to say ‘you don’t want a bored Becky’. It makes me chuckle, because it was in plain view all along.
I also know that I experienced feelings of social anxiety to fit in. Felt like a square peg in a round hole, not being interested in girly, superficial things but wanting to go and take photos of nature. I tried not to blurt things out because my ADHD manifested internally and masked my impulsiveness and inattentiveness. My brain wanted to chase the heady dopamine ding attached to working above and beyond to please people and strive for perfection.
Why are so many people getting diagnosed now?
I think there are a few reasons, but they all root in awareness.
Firstly, I was born in the early 80s, it was a different time. When I was a child and there wasn’t the awareness that ADHD was possible in girls as well as boys.
Secondly, there is greater awareness of late diagnosis. The average age for a woman to get diagnosed is 36-38 years old.
Thirdly, the pandemic stripped away so much of our busy-ness and we had to sit with ourselves indoors for 23 hours a day. That was illuminating for so many people.
And so, I believe that we are witnessing a significant increase in the number of diagnosed individuals, especially women, who are being diagnosed with ADHD.
What resources do you recommend to find out more about ADHD?
Most of my understanding has come through following ADHD accounts on instagram. They are easy to digest and are short bursts of information which suits by ADHD brain perfectly. There are a couple of websites too! Here’s a list of resources I’ve found useful:
- ADHD UK: https://adhduk.co.uk/
- ADDitude Mag: https://www.additudemag.com/
- I am paying attention: https://www.instagram.com/iampayingattention/
- The Psych Dorctor MD: https://www.instagram.com/thepsychdoctormd/
- The Mini ADHD Coach https://www.instagram.com/the_mini_adhd_coach/
- The ADHD Couple: https://www.instagram.com/adhd_couple/
- ADHD Meme Therapy: https://www.instagram.com/adhdmemetherapy/
- ADHD Nutritionist: https://www.instagram.com/adhd.nutritionist/
- ADHD Girls: https://www.instagram.com/adhd_girls/
What happens once you are diagnosed with ADHD?
I received a diagnosis of ADHD combined, so I exhibit traits of both hyperactivity and inattentiveness. At the end of the assessment, the psychologist asked if I wanted a referral to try medication, which piqued my curiosity. Consequently, they placed me on another waiting list until a nurse became available to guide me through the process of titration onto medication in order to find the right dose to help me.
Did you feel grief or shame or sadness when you were diagnosed?
I know these emotions can be experienced by folk and there have been moments where they have crept in. But the thing I mostly felt was relief, I knew it in every fibre of my being I was ADHD. I had found such a sense of belonging when I learned about ADHD. I would have been so shocked and confused if I wasn't diagnosed.
For the first few weeks, there was deep reflection that felt quite mentally exhausting. With so many things in life's journey bubbling up and reanalysing them knowing what I know now was difficult. There was never a point where I felt angry that I wished I could have my time again but with this diagnosis. For me so much growth has come from knowing how to work with myself. There are so many elements of ADHD that are hard, but I can be kind to myself now I know 'why'!
Are you taking medication for your ADHD?
Yes. I started titration with one medication but it didn’t suit me as I had some side effects. So I tried another, which I am just tweaking the amount I take and how I take it.
Has taking medication helped your ADHD?
Yes. It has been a really positive experience. I don’t feel like I have hyperactive thoughts anymore, like I am not restless, searching and feeling discontented. I'm not impulsive anymore and I am able to let things go that would have normally whirred around in my brain. I feel that it has helped me become swifter at making decisions and taking action on them. And just generally feel more able to do things I have struggled with before meds. Most of all, I feel a quiet calm. A contentedness that I’ve never felt in my life. I realised I’d been searching all my life for the ‘why’ and I feel so lucky to have found it. That my brain needed help with dopamine regulation and now it has with the meds, I’ve come home to myself.
Do you feel like meds have changed your personality and would I lose my sparkling personality on them?
I don’t feel that meds have changed me because I still feel and think like me - just with more clarity and less fizz and impulsivity. I don’t think you’d lose your sparkly personality. It would just perhaps feel a lot calmer and you could sparkle brighter with the clarity that meds can bring. The experience of meds is different for everyone, because ADHD is uniquely different in everyone and so I don’t want to dwell too heavily on meds because it is a very personal journey.
What has been your biggest realisation since being diagnosed with ADHD?
I don’t know if it is a realisation, but I haven’t had any coffee since late April when I started meds. Which for me feels unbelievable. It isn’t recommended to drink coffee or booze with meds. I used to use caffeine to self medicate and stimulate me in the morning. I’d crash off it in the afternoon and then use sugar to bring the dopamine for the rest of the day. I'm hopeful that the final tweaks to medication are helping me reduce the point at which meds wear off. And that my brain seeking food for stimulation in the evening has been cured by changing the timing of when I take them. For my whole life I’ve used food to self medicate, so I am hopeful that I will be able to make some health impacts that I’ve aspired to make for a long time.
What is ADHD like for you?
I've always had a busy brain that focuses on the next thing and the next and the next to satiate my ever hungry need for dopamine. I'm pure energy in motion. I always need to be doing something as nothingness under-stimulates me and makes me restless. I'm deeply intuitive, a curious observer, completely distracted by light and how I paint that light around people. I forget where I put my keys, I find things in random places, I forget to pay for car parking because my brain is already distracted by the more interesting reason I've parked rather than paying attention to the need to pay to be there.
I can enter into hyperfocus and not be aware of anything outside of that time. If I'm thirsty, hungry, need to use the bathroom, or have been sitting for three hours in a weird posture, I am not conscious of those needs because I am in the deepest state of flow during hyperfocus. I regain awareness only when something interrupts my hyperfocus, and then I suddenly need all of those things at once, limping off to the bathroom with a dead leg, an empty belly, and a dry mouth. I know that some of my biggest achievements have come from hyperfocus and the relentlessness of wanting to make an idea a success.
I'm creative and entrepreneurial. Which are common traits in ADHDers with so many running their own businesses. Our minds are wired to think in a different way and not accept that things are impossible or to find easier ways of doing things.
What causes ADHD?
No one knows! It is thought to have both genetic and/or environmental influence.
Are there any well know people who have ADHD?
Yes! In fact some of the greatest creative minds in history had or have ADHD:
Albert Einstein. Vincent Van Gogh. Walt Disney. John Lennon. Steve Jobbs. Cameron Diaz. Stevie Wonder. Whoopi Goldberg to name a few…..
How is ADHD defined?
ADHD stands for Attention Deficit Hyperactivity Disorder. I am in conflict with how the NHS define ADHD as ‘problem behaviour’ because it is a neurodevelopmental condition. The term ‘problem behaviour’ suggests that neuronormative behaviour is unproblematic and is to have all other behaviours measured against it.
Most articles will state that ADHD is more common in children rather than adults. Researchers estimate that 8.4% of children and 2.5% of adults have ADHD (Danielson, 2018; Simon, et al., 2009). However, we have already discussed here that nearly all women my age missed the opportunity to be diagnosed as children, and this was also historically true. Therefore, there are many undiagnosed adults because ADHD does not disappear when individuals reach adulthood.
For many, life gets worse because you have to take charge of your whole life when you turn 18. Before, someone else might have taken care of a lot of the things that require executive functioning in a home environment.
I think I don't lack attention because I can focus on things that interest me, and I find it challenging to generate the executive function required to be interested in things that don't capture my curiosity or attention. I prefer to see it as having a brain that is based on interests, and I have a lot of them.
Is ADHD a spectrum, can you be more or less ADHD than someone else?
How ADHD shows up is is unique to each person. So there isn’t a linear way of classifying if someone is more ADHD than another person. There are many facets to ADHD and some many not impact or affect you but might be profound for another person. You might find on days when you’re dysregulated, you can struggle with things than you do at times of greater regulation.
I believe I have responded to all the questions that people shared with me. I hope this journey has provided insight. I'll include any additional questions I receive along the way to create a valuable resource for others.
Thanks for reading.
Big Love, Rebecca xx
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