When I was a teacher, we received a lot of training on different conditions that could could impact the behaviour, learning and cognition of the children we taught. We were told it was vital that if we suspected something, we should report it. The sooner a condition was diagnosed, the earlier help could be offered and the better chance that child had for having their school life adapted to meet their needs.
In my experience, schools often get it right. We spot the signs and reach out for help from external agencies as soon as possible. It is then that we are met with ludicrous wait times that often run on into years, overstretched staff struggling to manage their mounting workload and a backlog of cases that you automatically go to the bottom of. Budget cuts have meant funding and staffing cuts which has meant that accessing help is harder than ever before.
One group in society that struggles with getting a diagnosis for their additional needs is girls. Girls with conditions such as Autism and ADHD often present differently to boys with the condition. Girls are better at ‘mimicking’ social norms so they can go under the radar for years, with some women reaching adulthood never having a diagnosis, help or even a referral. Their additional need going undiagnosed for so long can create mental health problems, a lack of understanding from others and a struggle to lead a ‘normal’ life.
Louise Mence is someone who knows this story well. Louise in her owns words is a ‘complex, hard working, 30 year old dog lover’. Louise has ADHD, MS and is in the process of being referred for an Autism diagnosis.
To me, Louise is the face of @neurocomplex_louisesjourney – an Instagram account with a mission to educate others on being an adult with ADHD and the effects of late diagnosis. I’ve learnt so much from Louise through following her – not only about ADHD, but about using your voice to help others and about starting each day with the intention to make it a good one.
In your own words, describe your diagnosis journey.
I was diagnosed at 5 and a half years old with ADHD. At the time I was in a private school that specialised in Dyslexia but I was never treated for ADHD. When I was 19, I was seen by GPs and physiatrists and given the diagnosis of personality disorder, bipolar, manic depression and cyclothymic personality disorder. Since then, I was given extremely addictive medication which I am finding hard to come off of now.
After finding out I had MS in October 2018, I was seen by a new psychiatrist and had to do a huge amount of paperwork to find out if I was on the Autistic Spectrum. I saw another ‘new’ team, where yet again another diagnosis was made, with my paperwork stating that I was ‘highly likely to be diagnosed with ASD and binge eating disorder’. As women who are not treated for ADHD are highly likely to be Autistic, I was referred urgently by all three departments and my GP for an Autism diagnosis. I was referred in June and have an appointment booked for November. So not a long wait…
You have been through an incredibly tough and unnecessarily long journey to get to where you are now, and there are still answers you need. How do you feel about the fact that it took so long for you to get diagnosed?
Hurt, ignored, misunderstood, upset, disappointed and forgotten – those are just some of the words to describe how it makes me feel.
It’s hard to understand how you could have been given so many different diagnosis over the years and have received to many treatments. How would you describe what it is like to have a condition like ADHD?
I am trapped with no understanding of who I truly am. I feel like I cannot get anything right and like I am always the black sheep of the family. The dark cloud is always above my head, reminding me it will rain.
Sometimes it’s like being stuck in a maze and there is no way out. You are forced to be reminded on a daily occurrence your not ‘normal’. I am isolated within myself, and when I get excitable, people give me the look of say ‘are you okay?’ My impulsiveness rules my life and made huge cracks in my family. I’m always wanting reassurance of ‘have I done okay?’
A naughty unknown girl in a lonely woman’s body, with no one to love me because I’m too much… that’s how it can feel.
How have people reacted towards you once they have found out about your diagnosis?
Some friends have said things like ‘but thought you had personality disorder?’ and ‘isn’t ADHD for kids?’. Close friends have said ‘oh it makes sense’, and one or two have even said ‘oh, she’s been looking for another label!’
I can imagine that lack of support and understanding from people in your life can only lead to further fuelling that feeling of isolation. What do you wish more people knew about ADHD so that they could better support and understand you?
I wish people knew that it’s not a label, it’s a feeling. It something that controls you – it’s excitement and exhaustion all in one. It’s the fact of nothing matters when you’re hyper focused. You have no fear, you have no care even for yourself.
What advice would you give to an adult who has only just found out that they have a condition like ADHD?
Find your tribe, find your people, don’t jump into medication, try everything you can holistic wise first. Addiction is hard. And remember it’s not just in boys or men that can have these conditions but women too.
One thing I would say is don’t ever stop on one doctors opinion and do your own research.
Greta Thunberg recently said that differences like her Aspergers can be a person’s superpower. How do you think ADHD has benefited your life?
I’m a really good worker and when I put my mind into something I am unstoppable: I have helped charities and raised money for big organisation and helped people with their life. I fail with my own finances, but I am really good at helping others with theirs.
You are open online about your ADHD, MS and life in general. Why do you think it is so important to present yourself online in this way?
I feel I’ve been put on this world to share and empower others and that’s all I want to do. I want people to be happy within themselves because I find it hard to be happy. I try my best to make other people feel like it’s okay. I want people to know that there are others out there like them and to help people make sure that they are not misdiagnosed.
I feel like was given ADHD and MS because I have an open voice that can help others.
You post daily about your intentions and share lots of inspirational quotes about life and focusing on positivity. How has this sense of understanding yourself and daily goals improved your life?
The daily intentions has made a change, but deep down, with my quotes do I believe I’m putting them into action? I don’t think so. I want to, but my forgetfulness and lack of care for myself means a lot of what I preach I don’t always put into practice. My mind gets so tired and I sleep a lot, but I always try my best to keep positive.
The intention movemen has made a difference. It’s been a massive learning experience – I have learnt more these last two weeks than I have since having ADHD. I don’t want to let my ‘#adhdtribe’ down and that pushes me.
If you could sum up your outlook on life in one statement, what would it be?
Treat others how you want to be treated.
You can follow Louise on Instagram at @neurocomplex_louisesjourney