Surprise Surprise! Well actually no it wasn’t! The other week I officially got re-diagnosed with combined ADHD.
Wait! You thought I already had a diagnosis? Well yep, you would be correct, the issue was I got diagnosed when I was ten years old, and when I was 17, well ADHD did not exist in adult form on the NHS.
So, it was basically a case of; we’re withdrawing all medication, off you pop and figure it out yourself. Honestly? I’ve not even had so much as a doctor ring me in 22 years asking me how I’m coping with ADHD or whether I need further support.
Sadly, my case is not that uncommon, while there are a lot of people getting a late diagnosis of ADHD, there are many people like myself who got left behind and now are having to get re-assessed.
Interestingly, despite knowing I have ADHD, I still had the pre late diagnosis nerves before and during my appointment; the invasive thoughts of ‘What if I’ve learnt to cope so well, they can’t see it?’ and ‘What will I do if they say I haven’t got it?’
“I was so relieved to be diagnosed with ADHD for a second time!”
ADHD gIRL
Common sense would ask; well hold on why do you need re-assessing if you’ve already got a diagnosis? The truth is there is only one word that gives the appropriate answer and that word is liability. Doctors don’t want to prescribe medication to someone who was diagnosed with ADHD 28 years ago and not been medicated for 21 years, and to be honest there is a part of me that goes; who can blame them?
The NHS would have had me waiting for seven years due to a backlog in my area, so I went through Right to Choose instead and got seen in four weeks. I’m now in the stage where there is a 3-6 month wait for medication, but hey it’s better than 7 years, right?
If you would have asked me even eight years ago whether I thought medication was a good treatment for ADHD for me personally, I would have said it’s a very individual decision and that I didn’t want to go back on medication. That was before I hit 37, possibly went into perimenopause and had my ADHD go a whole lot worse.
Over 21 years I’ve learnt various coping strategies to deal with aspects of my ADHD, but about a year ago, it all started going pear-shaped. The brain fog became worse, my focus started doing a number on me and the mental energy that allowed me to put those coping strategies in place? Very lacking.
“Apparently a lot of women get to their late thirties and realise they have ADHD, I got there and realised how much I mask my ADHD.”
adhd Girl
What surprised me most about my ADHD getting worse though was not the symptoms, but how much I had learnt to mask that was not designed for my neurodivergent brain. How much of myself I subdued and got rid of just to ensure I could achieve and function day to day in a society that is built on neurotypical norms.
The whole thing infuriated me, firstly because I never thought I could mask, let alone I’d been doing it for years without realising and secondly, I realised that true inclusion in society is an ideology, not a reality. That doesn’t mean to say people with ADHD are constantly excluded from things, but that accessible support and more importantly understanding/ awareness is certainly not to where it should be.
“Inclusion is a word that people love to use to, but sadly it’s not something that is actively being pursued by many.”
ADHD gIRL
Take what’s happening in the news for example, now I try not to be political because I personally can’t stand politics, nearly everyone is in it for themselves, but the headlines lately have all been about how many people with ADHD are on benefits, how many people are getting over diagnosed with ADHD. These kinds of headlines stir up inequality because they breed hate without giving context.
A lot of people who are on PIP (a type of disability benefit) with ADHD also work, and if they don’t it’s usually because they have comorbid conditions alongside it. The rise in diagnosis of ADHD is mainly coming from middle -aged woman who have lived in fear of failure and rejection their whole life.
What’s most concerning is that some of the people who hold negative views of ADHD are using public platforms to encourage division, and worst still some of these people are highly educated.
I’ve seen it said by some people, well how does having ADHD make things worse? When the question that should be being asked right across society is how can we make having ADHD better? That starts from the very top; politicians, CEOS and public sector services.
“A lot of people find it easier to hate something they don’t understand, that to actively find out more information.”
ADHD gIRL
Afterall, how can you make support accessible, put reasonable adjustments in place if you do not have the knowledge or attitude to deal with someone who is different in a non-visible way?
That’s why I’m calling for change. Today ADHD and Me is officially launching ‘The Time to be Bigger Campaign.’ We want people in power and public services to start taking responsibility to make our society a more tolerant and caring place for neurodivergent people.
As part of this campaign, we’re asking you to do any number of three things: –
1. Sign our petition demanding the government make it lawful that every public service has to give their employees mandatory hidden disability training.
2. Share your story! Whether you’ve faced discrimination or found it hard to tolerate a world that wasn’t made for you we want to hear about it. Either use the hashtag #time2bbigger on social media or send us your story via contact@adhdandme.org
3. Encourage as many people as possible to complete our course ADHD: A Deeper Understanding which not only promotes real lived experience, but also shows the hidden parts of ADHD that nobody talks about such as masking and emotional dysregulation.
One person can bring change alone, but if we all stand together and fight for our right to be seen and heard, then just maybe we can force people to notice.
Catch you in two weeks ADHDers and allies, where I’ll be handing over the blog to a brave and honest young woman who’s going to share her story of recovery from trauma when she also has AuDHD.
