So I have been a little quiet on the blog over the last few months as I have been processing something huge in my life that has really affected the way I think and feel about everything I thought I knew about myself. I was struggling to move forward and then I realised that for the last 6 years I have processed things by writing blog posts and that this is no exception! This is going to be a long one I think, so bear with me!! This is the story about how and why I came to get an ADHD diagnosis at the age of 37. I’ve put happy photos through to show that although I talk about the negatives a lot, it really isn’t all bad!
I watched this video yesterday and it explained so clearly what I’ve been going through and says that it’s not something to be ashamed of, or to try and hide, but a neurological difference that makes me who I am and explains a lot of the reasons for why I do things the way I do. I shared it on my instagram stories and had a lot of questions so I thought I’d cover some of it in a blog post and I’m planning to make a video too…if I can ever get some time alone in the house! I also shared on my instagram grid (above) and Facebook page and had an overwhelming avalanche of comments so I will try and address some of the questions from there too.
Some of the signs of ADHD in me
To give a little back story first, my whole life I have felt ‘different’. A little out of step with the rest of the world. No matter how hard I tried to assimilate, I never quite managed it effectively. I would emulate the behaviours of the other girls at school but I’d always get it slightly wrong or be accused of ‘copying’ them and it made me stand out even more! I just became a personality chameleon, changing who I was, my likes and dislikes, music taste, pretty much everything to fit the group of friends I had at the time. A chronic day dreamer, I was always getting told I ‘wasn’t achieving my potential’ and even in subjects I loved, I wouldn’t start projects until the night before, or start and never finish them. This caused me no end of stress as I really really wanted to do well. I would also get into trouble at school for being a giggler, and I found it irresistible to be the class clown, always taking on a challenge issues by a classmate, even if I knew it would result in being sent out. This is confusing to me as I also have a huge fear of breaking rules and getting into trouble. These two sides of me don’t work well together!
I would also get totally invested in new hobbies, especially as I got older, getting so into them, buying all the equipment for it, booking onto courses but then the enthusiasm would wane, leaving me feeling guilty about the amount of money and time I have invested in them and yet unable to pick them up again. Once my brain flicked the ‘off’ switch on something, that’s it, no matter how hard I tried, I couldn’t get back into it. This also applied to people when I was younger, intense crushes and friendships that passed as quickly as they started.
I was predicted 10 As at GCSE but I didn’t get anywhere near that, something I’ve carried around for years as one of my biggest failings. I also dropped out of uni and started lots of jobs, being great at them before getting bored and moving on! On my plus side, I am very creative (the projects I actually finish are great!), and I have a very business minded brain, it’s just that I don’t think the same way as others, but there is a lot to be said about thinking outside of the box. I also have a lot of empathy and understanding and a lot of energy. Apparently I’m quite funny too, possibly because I don’t think too hard about doing off the wall things!
At what point did I think I needed help?
When I had my children, I really felt like I unravelled, I was sure that everyone had been given a manual to adulting that I had somehow never had access to. Having always suffered with the darker side of myself, depression and anxiety plagued me from my early teens and I developed severe postnatal depression after my second son was born. (The first time I was given antidepressants was at school. They didn’t help. Over the years I must have tried every antidepressant going but when I was younger I coasted through life using drinking and various other things like smoking to keep the social anxiety at bay and so I didn’t really focus on it too much Obviously these crutches were gone once I had kids). After several years of medication and therapy, I made a recovery of sorts and yet always felt like I was a chaotic force of anxiety and self loathing as I tried to get my children to school on time but couldn’t find my keys, their shoes, forgot their forms over and over again. I feel like I was always living life on the back foot. Piles of papers everywhere, never knowing what to cook for dinner, going food shopping and spending a fortune without having a meal to put together at the end of it, missing bill payments. My house was always a mess, we never had paired socks and I felt enormous anxiety right to my core all the time.
I also struggled with people, no matter what I did, I felt awkward and uncomfortable in groups. Looking back now, I think I just gave off a very chaotic and hyper energy and I think that’s probably quite hard to deal with. I realised that I would have to make a real effort to listen when people were talking to me as my brain would so easily get distracted and start thinking about things that were totally unrelated and then I’d zone back in and realise I’d missed a big chunk of the conversation with no clue that I’d drifted. This just adds massively to social anxiety, I’m much better one to one but I always had to make a real effort to let other people talk, consciously saying in my head ‘it’s their turn now, be quiet.’
How I discovered ADHD
I started researching neurodiversity and wondered if I might be autistic, but yet I didn’t tick all the boxes. I knew there was something neurodiverse about me though, so I applied for an assessment, knowing that the process can take years. Then a friend asked me if I’d considered ADHD. I was surprised, I only knew the stereotype for it, primary school kids jumping off desks and flipping tables, that wasn’t me at all. If anything I was the opposite, super shy and rule abiding (except when I was a teen and more easily led!) but she knows me so well and I trust her opinion and so I started researching ADHD in women, did a lot of online tests for ADHD in women (like this one) and joined some Facebook groups and resonated with everything in there. It was like a light had gone on, there were other people out there just like me. With chaos and piles of papers on every surface and mess and a desperate feeling of ‘wrong-ness’.
Getting a diagnosis
I knew I needed to pursue this, for the sake of my mental health and my ability to be a better, calmer mum to my two children. I spoke to my GP, who was lovely, but said ‘a lot of this sounds like anxiety’. I explained that I had been treated over and over for anxiety and it never went away and he very sweetly agreed to put me forward for a referral. This too can take years but I heard about Psychiatry UK and the NHS right to choose option. (This is only an option in England and a lot of GPs haven’t heard of it.) I was referred and saw a Psychiatrist there within a week although I think they are a little overwhelmed at the moment. The assessment is a lot of forms filled in by you and someone who knows you well. There is some on childhood but it doesn’t seem to be a massive factor as they are very aware that memory is a terrible thing for someone with ADHD, people change so much of their behaviour as they get older and of the difference in presentation for women. Then an hour long face to face (video) appointment with a psychiatrist who I had chosen. He told me within 5 minutes that I had Inattentive ADHD. There is also Hyperactive and Combined. It used to be called ADD but they have put them all under one umbrella now. I think the hyperactivity is your thoughts for inattentive. Although saying that, I also found it hard to sit down and watch tv without also being on my phone/getting up to do something every few minutes and I have to doodle/jiggle my leg to pay attention. Apparently I wouldn’t sit in my car seat as a child and I’ve always hated being told what to do! I feel like this got worse as I got older! (You can find more detailed advice about approaching your doctor to ask for an assessment here.)
Medication for ADHD
A lot of the hour was spent discussing treatment for ADHD and I made the decision to start medication. There are several treatment options, each with their own benefits and downsides, something to discuss with your psychiatrist. It is all then managed by a specialist nurse through your patient portal with Psychiatry UK. Right up until the point I received my medication, I had severe imposter syndrome. I thought that I was looking for a reason for my general inability to function as everyone else seemed to. Surely everyone was similar. I just wanted to get myself a diagnosis as an excuse. Maybe the psychiatrist was wrong. But I took my first tablet and my whole everything changed. The anxiety was gone, just vanished. My thoughts were calm and ordered, I liken it to a post office, before they were all shouting at me at once, things I needed to do, things I hadn’t done, every little thing at once. Now they line up in an orderly row, they queue behind the barriers, come up to the counter, explain themselves quietly, I tackle them and then they move on. Then the next one comes. It is such a relief! I felt very much that I wasn’t as productive initially, I felt that I had far too much time. Then I realised I was just more efficient. I used to spend all day really really busily running between jobs. Half way through doing my tax return I’d remember we had no milk, so I’d start an online shop, before remembering the kids had no clean school trousers, so I’d go to put a wash on, then on my way to do that I’d get sidetracked by something else. At the end of the day I’d realise that the tax return wasn’t done, the online shop had never been checked out so I’d lost my slot, the wash hadn’t gone on and so there were no clean trousers and I’d basically exhausted myself achieving nothing. Every single day.
How have things changed since finding out?
Now I can at least finish a job that I started! It hasn’t been all rosy, the medication is pretty strong stuff and you have to regularly monitor your blood pressure and heart rate. I’ve found that trying to increase my dose too high gives me side effects like clenched jaw and can make me a bit manic but if I drop down it wears off too early and I have a very stressful evening with the kids. But I’m persevering with it, and I feel such huge benefits that I know I will take it for the rest of my life. I also had enormous issues with my weight for my whole life, as I couldn’t stop bingeing. I would eat whole tubs of ice cream when I was younger and if it was nice, I couldn’t stop. Every pass of the cupboard I would grab something. I also couldn’t stick consistently to exercise. I have since found out that Binge Eating Disorder (something I was diagnosed with in school but had never had followed up), is very linked to ADHD, which makes sense as impulse control is an issue, and the medication I’m on has really helped me control that. I eat meals, stop when I’m full, hardly ever snack and that compulsion to stand at the cupboard eating five biscuits back to back has vanished. I’m also so much kinder to myself, I can see where all the things I’ve punished myself for for all these years were not my fault. I’m a good person. With a slightly different brain, which makes me unique.
Final thoughts
Ok, I think I’m done! Told you it would be a long one. I was nervous to share but I’ve decided that I don’t want anyone to have the years of unhappiness I had. I’m not sad to have ADHD, I’m sad I went undiagnosed for so long as I firmly believe that had I known, I’d have felt a hell of a lot better about myself as a person, my self esteem wouldn’t have been so crushed and I’d have finished some of the amazing things I started. Saying that though, I’m super proud of myself. I’ve got to 37, built my own business, fantastic family, incredible friends and I’ve got such a lovely community around me thanks to social media. So it’s not all bad, but knowing would have made it better! Read more about the signs of ADHD in girls and women.
My other post, ‘Why is everyone talking about ADHD?’ focuses a bit more on the effect the pandemic and especially lockdown have had on people with undiagnosed ADHD.
Do get in touch if you want to talk further, I’m happy to chat! Just find me on social media and send me a message. Instagram, Facebook or Twitter. Or just drop me an email to louise@pinkpearbear.com
This has been so so interesting. I feel as though I know you and I’ve also met you so I always thought of you as really organised and switched on and very confident. A lot of what you have said sounds like me, the shyness but I guess you fake it like I do a lot, the day dreaming in school and I always think I could have done far better. This has been quite eye opening. I am def going to look further into this. Thanks.
It’s brilliant that you have written about this, I’m sure you will have helped many others by sharing. Too many people still don’t know enough about ADHD, and that myth that everyone with ADHD is outwardly hyperactive needs smashing!
Thank you so much Steph. It’s been such an eye opener of a week as to how many people are struggling and had no idea why.
This is great, thank you so much for taking the time to share this!
This all resonates so much. I’ve taken the step to make a GP appointment today but I’m very nervous that he won’t refer me like I ask! I’m simultaneously convinced and struggling with imposter syndrome… Thank you for sharing!
Thank you so much for writing this. I’m really pleased you have managed to put this into words and share how this has affected for so long and how your journey is beginning now.
I see a lot of my step son in this but everyone is determined that there is nothing wrong with him a part from some sensory seeking behaviour. He is so scattered, his brain is a mile a minute, he cant sit still and focus, he will get after 10 mins of something he whinged and begged to do, socialising misses him, he blends in never really finding himself. I hope he wont have to go through years of not knowing but without school support they shut you down.
Wishing you all the best x
I’m so sorry to hear your step son is struggling so much. It sounds like he ticks quite a few boxes. I really hope you get some answers for him.
Omg Louise. You’ve basically described my life to a t.
But like you just put my unorganised self down to me being well unorganised.
But lately I’ve been thinking may this is just who I am.
I’ve never really though of it being a condition rather just my personality. I wonder if with some therapy/ help I can actually become more organised within my life & my head after all??
Oh Louise I would never have known! You always have seemed so popular and comfortable in groups!
I’m so glad you were able to get your diagnosis and that the medication is helping.
Thanks so much Joy. I was pretty good at faking it really! And I was ok if I had friends around or a drink in my hand but still not totally comfortable.
Some of your paragraphs resonated so much with me. I’m so glad you got a diagnosis. The relief of knowing it’s not you just being crap (and I mean that with love not judgement as I don’t know you well enough to know if you’re crap or not!) must be so good. And then to be able to talk about it, work through it, medicate it well… just brilliant. Thanks for sharing this for women too – I’ve heard before that women tend to mask it so well that they’re diagnosed late. I hope this helps a few of them.
I’ve had so many messages from people saying that they have called the doctor off the back of these posts and my TikTok vids. It’s been an emotional week but a positive empowering one too.
You have literally described my life. I came here from your tik tok because everything you were saying was me. Even down to the silly things like leaving the cupboards open. I had an appointment with my Dr before seeing this, and he agreed to refer me (I asked to go private) and told me to call BMI. I am going to take your advice in right to refer. Thank you for sharing. Are there any online communities you can suggest? xxx
Wonderful piece. I realised this summer I had undiagnosed ADHD, the lockdown stripped away my business and so external distractions were not there. Plus I never realised until reading, that the Menopause revealed my ADHD due to even more Dopamine depleting. I drank lots (Bingeing as you mention), so I decided to create a lower alcohol drink (12% Gin not 37.5%). And been to see Doc.
As I am high performing they won’t pay for NHS diagnosis but going to look up the link you said. Thanks for sharing.
I’m so pleased I could help you. Lockdown took away all the external coping strategies I know I used to give me the little dopamine hits I needed.
I’m so pleased that you’ve got your diagnosis lovely and that the medication is helping you. Take care.
Wow. As I have been diagnosed too nearly 12 months now. I have gone through so many different meds. I am now on evlase same as yourself Just wondering what MG your on, as I am on 50.
Thank you so much for sharing this. My perception of ADD / ADHD was very similar to yours until I carried out my own research.
I’m going through my own journey at the moment, so this was a great help. Thank you.
I have been considering if I am autistic but reading your experience sounds so much more like who I am. I find this so relatable. I do have anxiety but that doesn’t explain the hyper focus and sometimes obsessive thoughts on things and then procrastinating/giving up and feeling so guilty about it.
Thanks so much for sharing the detail, I saw your TikTok videos, and others, and really felt it might be a diagnosis that would fit me, although, like you, I feel a bit of a fraud thinking that way. I’m 55 and finally started HRT before Christmas after suffering symptoms for over 12 years. I do feel slightly more focussed and the hot flushes are gone, thankfully, having had those 6 years. It wouldn’t hurt to find out more so I’m going to try the questionnaire, thanks again for sharing
Holy flaps! I feel like you’ve just written about me.
I’ve been wrestling with getting an assessment for soo long, but like you mentioned, I then wonder if I’m just trying to find an excuse for my actions, over reactions and lack of action.
Thank you. Now, I am going to go for it and apply for a diagnosis for myself first and then my son. Xx
Wow! Some story! And very similar to how I was/am.
To cut a long story short, I was diagnosed as Autistic (most would call it Asperger’s) at age 55 in late 2018, which was (and still is to some extent) very difficult to come to terms with. But it answered so many questions, and solved so many puzzles, it was worth it. I’m still not convinced it was quite the right diagnosis, but I’m certainly neurodiverse.
After a local employer wasn’t very supportive of my condition, resulting in me deciding to resign, I am now my own boss, and building my own business. I love tech, I love what I do, and I just want to help people out with their tech!
And what you wrote, “I’m sad I went undiagnosed for so long as I firmly believe that had I known, I’d have felt a hell of a lot better about myself as a person, my self esteem wouldn’t have been so crushed and I’d have finished some of the amazing things I started” really struck a chord with me.
Thank you.
Thank you for sharing this. I found you through tiktok and I feel like we are the same person. I feel like such a failure because I’m chronically unorganised and messy even when I try really really hard I just keep failing. I’ve recently taken up counselling to try get my life in order after many failed attempts and diagnosis but maybe it’s this? Thank you for the advice I’m going to call my gp tomorrow.
I discover you on TikTok last week and since then my internet browser is full of tabs researching…. Admittedly mostly half read. I filled out the forms for the right to choose and I’ve done the psychiatry UK questionnaire…. Now I have to convey what my thoughts are on a telephone appointment with the GP. I had to go through a massive symptom checker and my appointment has been under the assumption that I have bipolar and underactive thyroid but at least I’ll get to speak to someone. I’ll probably waffle for 10 mins and get told to go away…. But at least I tried right??
Any tips on what I need to mention? I feel like reading your blog is literally a diary of my life, without the binge eating disorder diagnosis, but damn if I can’t help myself but eat something every time I go into the kitchen
Thanks for putting all this out here. I’ve not even considered ADHD before, hell, until my son was diagnosed with PDA, I’d never considered a spectrum disorder for myself at all, but *blam* it’s just hit me right in the face!
Thanks again!