We’re seeing a trend of more women getting an ADHD diagnosis later in life. With this in mind, we’ve been chatting to Sarah, a member of our Mobilise community. Sarah is a carer to her mum and daughter, and was diagnosed with ADHD in her fifties.
Sarah shares her journey to diagnosis and how ADHD impacts in her caring role, including the challenges and strengths her diagnosis brings.
What is ADHD?
ADHD (Attention Deficit Hyperactivity Disorder) is a common condition that affects behaviour. It can make sitting still and concentrating more challenging. Some people say it also causes them to feel forgetful and disorganised.
Misinformation about ADHD means that many women miss out on a diagnosis until later in life. Here, Sarah explains how she was surprised to learn she had the condition after discovering that ADHD can present differently in women than in men.
Sarah’s story
Looking back, there were always signs that I had ADHD. As a young girl, I had a history of being a bit of a daydreamer. I remember a teacher at school shaking me to get me to pay attention when they could see my mind was drifting elsewhere.
I’d struggle to keep on top of homework and so I’d fall badly behind all the time. As the years went on, these challenges continued and I struggled to stay on top of my university work.
When I completed my master’s degree, it took me four years to finish the work instead of two. I had no idea that I had ADHD. For a long time, I thought I was just low on energy and found it hard to get going.
A diagnosis by chance
I’m 52 years old. I was 50 when I received my ADHD diagnosis. It was a bit of a strange journey to get to this point. My daughter was diagnosed with ADHD and autism when she was 15, so I had an awareness of both conditions. I had suspected for some time that I had autism, so I booked myself in for an assessment
Although I ticked a lot of the boxes for autism, the specialist explained that the results indicated that I was far more likely to have OCD and ADHD. While I've known for years that I have OCD, the idea that I might have ADHD was a complete shock to me.
I decided to get clarity by going forward with an official ADHD assessment. I felt like a complete fraud while I was going through the process, as I was so sure I didn’t have it.
Afterwards, when I asked the person interviewing me how certain they were that I had ADHD, she said she was 98% certain just from talking to me. When she read through my school reports, she was then 100% certain.
Myths and misinformation
The tricky thing about ADHD is that people often look at it through a stereotypical ‘male’ lens. We associate it with hyperactivity and physical traits.
For me, the restlessness and agitation is internal. It manifests in daydreaming, disorganisation and struggles with focus.
Women who have ADHD tend to also mask their symptoms. Although I might feel restless, I’ll try to keep it to myself. It might not be as obvious.
I think this masking element is one of the main reasons why women and girls don’t always get a diagnosis. Plus, there is a lack of understanding about the condition, and even more so when I was a girl at school.
My caring role
Just before lockdown, I had spent five years caring for my mum who has dementia. At the beginning of the pandemic, we made the decision to move her into a local care home.
At the same time, I was looking after my daughter who has autism, ADHD and very serious mental health issues. She was 15 when she was diagnosed and she is now 18. She lives at home with me.
When I got my diagnosis, I was working three part-time jobs. I had to leave one of them when my daughter was hospitalised last year due to her mental health challenges.
Initially, getting a diagnosis was a huge relief. In many ways, it has allowed me to be a lot kinder to myself.
Difficulties with getting others to understand
At first, my husband and my sisters didn’t believe the diagnosis. That was really hard. I’m on an ADHD support group and I’ve found that this is sadly a common experience for many women.
My husband has finally come around to understanding it. I recently went on a holiday with my sister and we had an argument because she felt fed up with me talking about my ADHD. It was only when I explained the diagnosis had happened by chance, and that I hadn’t sought it out, that she finally found it believable.
Another friend recently suggested that I was trying to medicalise myself. People don’t always understand - especially if you’ve spent many years successfully masking your difficulties in front of them.
It can make caring more challenging
Caring can be incredibly difficult with ADHD. Particularly when I had to care for both my mum and daughter, while working three jobs. I felt like I was constantly juggling. That was the image I had of myself.
I have a son too so I have to make sure that he doesn’t get eclipsed in all of this. Recently, I’ve had to cut back on work and I’ve dropped one of my jobs. I had to step back because it was too exhausting.
I suffer very badly from fatigue, which I never realised was related to ADHD. I get so overwhelmed with the organisation that goes into the smallest things, that it leaves me exhausted. Every day now, I have to take a nap. I don't sleep well at night and I think that’s because of my overactive ADHD mind.
Plus, my daughter is very chaotic and she’s constantly losing things like house keys and bank cards. It means that I have to do a lot of admin work on her behalf - all things that other 18-year-olds might be able to do independently. That can be exhausting - especially with ADHD which means that organisation isn’t my strong point.
There are strengths to caring with ADHD
As I mentioned earlier, I’m a daydreamer. People with ADHD can have a lot of creative energy. We can also be very empathetic.
With taking care of mum and her dementia, I contributed a lot more than my sisters did. I dropped a day of work to look after her, which affected me financially. Empathy can be a very important skill though, especially as an unpaid carer.
How I’ve adapted my caring
Since my diagnosis, the main thing I’ve changed is my mindset. Now I try to be much kinder to myself.
In the past, if I was having a morning where I was low on energy, I would be very hard on myself. Now I put it into perspective and let myself take a step back.
The other thing to mention is that I was prescribed some medication for managing ADHD. It helped me feel more organised but also aggravated my anxiety, so I decided not to continue with it. I'm waiting to see the ADHD team about an alternative. Meanwhile, I’m on antidepressants to manage my anxiety.
I attend an NHS ADHD support group. Each week, we’ll focus on a new topic such as memory or procrastination. As a group, we’ll discuss any tips or strategies that have helped us. I find that really useful. I also do art therapy with other unpaid carers. We don’t really talk about our caring work but it’s just nice to be around people who understand.
My advice to other carers
If you think you might have ADHD, speak to your GP. The first thing you need to do is get a diagnosis. There’s often a very long waiting list for an assessment.
A good tip: we have a legal right to choose our mental health service provider in England. If you ask your GP to refer you to an organisation called Psychiatry UK, you can access the assessment more quickly.
Even though it’s a private service you can do it for free on the NHS. Visit psychiatry-uk.com/right-to-choose for information on how to exercise your right to choose as a patient.
If you are diagnosed with ADHD, I would recommend joining lots of different virtual and in-person groups. For example, there are lots of Facebook groups where we share questions and advice about the condition. If you’re a woman, a women-specific group can be helpful as I found I didn’t really relate to a lot of the male experiences.
You don’t need to wait for a formal diagnosis to join many of these groups, which means we don’t need to wait for support.
Overall though, getting a diagnosis is the best thing you can do. Just having that knowledge can help you to understand why you’ve struggled with certain things for many years. This can be a real relief.
*Names have been changed at the request of the interviewee
What are the key signs of ADHD?
According to the NHS, the symptoms of ADHD fall into two general categories:
Difficulty with concentrating and focusing
Hyperactivity and impulsiveness
In day-to-day life, we might notice this showing up in any of the following scenarios:
Struggling to get organised
Starting new tasks or jobs before finishing old ones
Feeling like we lack attention to detail
Finding it difficult to focus on tasks or prioritise what needs to be done first
Losing things often
Feeling forgetful
Feeling restless
Difficulty with waiting our turn in conversation
Noticing our moods are changeable
Struggling to deal with stress
Feeling very impatient
Useful resources
ADHD Foundation - The ADHD Foundation provides advice and support to people living with ADHD. The charity’s website has a helpful resources section with tips on getting organised, setting goals and supporting our mental wellbeing.
Reddit - The ADHD thread on Reddit is the biggest online forum for the condition on the internet. Users post their triumphs, challenges and observations about living with ADHD. All the content on the site can be voted up or down by other members, so you’ll see the most popular posts first.
Women and ADHD podcast with Katy Weber - Like many women with ADHD, Katy Weber received her diagnosis later in life. Each week, she speaks to a female guest who discovered they have ADHD in adulthood too. From navigating medication to avoiding burnout, she looks at some useful topics around the condition.
How to ADHD - Jessica McCabe’s highly recommended ADHD channel shares short and easy-to-watch insights into the ADHD brain. Her video on ‘How to know if you have ADHD’ is a particularly useful place to start.
Ellie Middleton - Ellie is an ADHD activist who was diagnosed in her early twenties. Through her LinkedIn page, Ellie disproves myths about the condition and is a vocal champion of ADHD in the workplace.
Finally, if you are also looking after a family member, friend or neighbour, join the Mobilise private Facebook group for unpaid carers. A space where those of us who just 'get it' come together and help one another by sharing our experiences and wisdom.