Welcome to You Don’t Look Sick – our weekly series about living with invisible illness and disabilities.
Many people with conditions you can’t see, face judgement because they look healthy to the outside world.
Elly Badcock, 29, who lives in Cardiff, has dyspraxia and attention deficit disorder (ADD) – a behavioural disorder that includes symptoms such as inattentiveness, hyperactivity and impulsiveness.
Dyspraxia is a developmental coordination disorder, which affects how Elly does anything that requires coordination or movement.
It can affect her memory and how she learns new things as well as difficulties with day-to-day activities like dressing, preparing meals, writing, typing, grasping small objects.
The condition can make Elly come across as ‘clumsy’ due to a lack of coordination.
It also affects her ability to manage her time, plan and organise.
Despite dyspraxia having an impact on many aspects of her life, Elly has been told that her condition isn’t real, which has been upsetting.
Elly has completed two degrees and is considering studying for a PhD and she says that her academic achievements affect how people think about her condition.
She says: ‘What I find most often is that people dismiss the fact I’m dyspraxic because I look like I’m doing well in life. I’ve had a couple of people say to me that dyspraxia doesn’t count as a ‘real’ disability.
‘I find this particularly offensive, firstly because it suggests that you can only be ‘really’ disabled if you have a visible disability, and secondly because it minimises the huge amount of effort that I put in to doing the things I want and need to do.
‘Just maintaining the basic aspects of life like making three meals a day, showering and brushing my teeth, having clean clothes to wear, getting to work or study on time and keeping the house one step above being an environmental health hazard, take up so much of my mental energy.’
Elly wasn’t diagnosed with the condition until she was at university but she has lived with it throughout her life.
It affects between 2 and 6% of the population but many people with milder symptoms are not diagnosed until adulthood.
Elly explains: ‘I was diagnosed at the end of my second year at the School of Oriental and African Studies – the first university I attended.
‘I visited the school’s Learning Support Centre on the verge of a breakdown, as I felt my ability to manage my academic and personal life was rapidly spiralling out of control.’
Elly was missing deadlines, struggling to attend lectures and to organise her life.
She adds: ‘My housemates were annoyed at my constant inability to do any cleaning, and my social life was all over the place because I could never remember what I was doing and when.
‘A friend had suggested I might be dyspraxic and the university agreed – I was referred to an educational psychologist, who said that some parts of my dyspraxic profile were so pronounced that they were only seen in a small number of dyspraxic people.
‘When I got my diagnosis, I had an overwhelming sense of relief. I had spent my entire life up until this point berating myself for being clumsy, forgetful, lazy, and stupid.
‘I wondered why it took me so long to learn how to ride a bike, or do up a tie or shoelaces. I always misplaced things, including important things like money, passports, my school books and so on, and a lot of my school reports said “Elly is bright but disorganised and fails to apply herself.”
‘Knowing that this was because I had a neurological condition, rather than being a personal failing, was so validating and allowed me to be a lot more content with the person I am.’
Now studying for her second degree in occupational therapy, Elly felt more able to ask for more support to be put in place to help with her condition but says it does affect her every day.
She says: ‘It can be hard to describe the impact, because people often say “Oh, I’m like that too, so clumsy!”
‘Everyone has had those kinds of days where you lose your keys when you’re running late to a meeting, and you notice there’s a ladder in your tights, then you get to work and realise you didn’t bring your lunch, and then someone tells you you’ve got mascara on your face, and because you’re so flustered you drop a cup of coffee down yourself, and the vicious cycle continues. With dyspraxia, that’s a good day!
‘Dyspraxia affects motor co-ordination, ability to plan and sequence information, and working memory. In laymen’s terms, that means I’m chronically forgetful, clumsy, disorganised and chaotic.’
Small things like writing with a pen, tying her shoelaces and doing up buttons are difficult for Elly.
‘Dyspraxia used to be called ‘clumsy child syndrome’, because one of the main symptoms was being obviously physically clumsy.
‘I have problems with fine and gross motor skills (big and small movements).
‘I trip and fall a lot, bump into tables, chairs and door frames, and have a slower response time than other people to obstacles and hazards.
‘On a particularly memorable day last year, before showing up for the first day of a job, I tripped over my own feet and threw my phone into a toilet as I went flying. When I brought a pack of rice to put the phone in, I opened it at the new job’s office and it exploded, sending rice flying all over the immaculate work space and carpet.
‘One of the biggest challenges for me at the moment is driving. Because I have a slow reaction time, I used to be scared of even crossing roads as a pedestrian because I couldn’t tell how quickly a car was approaching.
‘This means I find driving extremely nerve-wracking. I tried learning in a manual car but found it impossible to manage changing gear, watching the road and dealing with three pedals. I’m currently learning in an automatic but find it very anxiety-inducing and difficult, and it frustrates me that my ability to travel, work and socialise is limited because of this.’
What are the symptoms of dyspraxia in adults?
If you have dyspraxia you may have problems with:
- co-ordination, balance and movement
- learning new skills, thinking, and remembering information at work and in leisure activities
- daily living skills, such as dressing or preparing meals to time
- writing, typing, drawing and grasping small objects
- social situations
- dealing with your emotions
- time management, planning and personal organisation
Elly remembers having problems like this throughout her life.
‘I vividly remember as a child holding up an entire coach of Girl Guides for 30 minutes because I lost my packed lunch and found it before putting it down to find something else and losing it again, no less than four times.
‘I still do things like this on at least a weekly basis, and it is so frustrating that I often cry.
‘Managing everyday things like washing is still a struggle – because I find these tasks so overwhelming, I can sometimes go weeks without remembering to wash my clothes and days without remembering to brush my teeth.
‘This is the kind of thing that a lot of dyspraxic people won’t talk about, but I think it’s important that people know that just because you see a person who is managing well, it doesn’t mean they’re not burning themselves out just to maintain a façade of normality.’
It takes Elly around one and a half to two hours to leave the house in the morning as it takes her much longer to organise tasks.
‘Once I’ve mentally psyched myself up for the day and dealt with making breakfast, I have to build in at least an extra half an hour for finding things I’ve lost like my bank card or shoes,’ she says.
‘I build in extra time to come back and check I’ve turned off the oven (which I often leave on), check that I’ve closed the front door, and the inevitable return for my keys/phone/laptop or whatever I’ve left behind.
‘Whenever I’ve tried to reduce the amount of time I need, it’s resulted in me forgetting something really important, so I just accept that it takes me longer and build this time in now.’
Elly’s memory problems can also make just having a conversation more difficult.
Getting support for dyspraxia
If you think you have undiagnosed dyspraxia, it is best to speak to your GP about your symptoms and how they impact your life.
There are charities to help people with dyspraxia:
- Dyspraxia Foundation has advice and a list of local support groups to join.
- Dyspraxic Adults is a forum for adults with dyspraxia
- Movement Matters UK offers advice about the condition.
She says: ‘Working memory is another thing I struggle with – this means the ability to remember something that just happened.
‘I really struggle with this, so my entire life is like when you’re digging around for your purse at the supermarket and you realise it’s in your hand. People tell me something and I immediately forget it.
‘When I’m talking, I can forget the beginning of the sentence by the time I’ve got to the end and have no idea what I’m talking about. I can ask the same question of my partner three or four times in a row because I’ve forgotten the answer.
‘I try and make this an endearing quality about me, but I imagine it’s really frustrating when it seems like I’m not listening, or I forget to turn up when my friends have arranged to meet me.
‘This can affect me at work and education, too – if someone asks me a question about something they’ve just told me, it looks like I haven’t been listening because I can’t answer it.
‘But if they gave me an extra minute or two to process and then asked me again, I’d be able to answer them much more eloquently.’
Despite the day-to-day impact, Elly has built a strong support network since her diagnosis.
She explains: ‘I am lucky because I have a fantastic group of friends who always get exactly the right balance between empathising with the challenges of being dyspraxic, but laughing with me at the ridiculous things I do as a result of it.
‘I constantly forget my friend’s birthdays, break my phone and lose all their phone numbers, lose their possessions (I’m still sorry about your pants, Vicki) and forget I’m supposed to be meeting them.
‘The fact that they understand me is such a massive relief, because otherwise I’d feel like friendship was just something else I’d failed at.
‘I also seek out other dyspraxic people, online or in real life, to share my frustrations with. When my first driving lesson included me not only mixing up the brake and accelerator, but falling in and out of the car, dyspraxic support groups online were there to sympathise.
‘I have had really good support from both the universities I’ve attended, where I’ve been able to access the Disabled Student’s Allowance which paid for a laptop with mind mapping software, speech-to-text software because I get distracted in the time it takes to switch between a journal article and a word document to make notes, and I also had mentoring and life skills support from the disability office.
‘When I worked, it was at The National Autistic Society who were really fantastic in making adjustments for me to work. They gave me a whiteboard so I could plan my day, offered extra support and supervision when I needed it, and generally just accepted me for who I am.
‘For me, this is what makes all the difference. I believe that disability is caused by living in a society that isn’t built for disabled people’s needs.
‘When you have a social and physical environment where people support you and make the necessary adjustments, you’re able to succeed and thrive just as much as anyone else.’
She wants to see more awareness of the condition and for people to understand that it’s not just clumsiness or forgetfulness.
She says: ‘I think people need to be more aware of them. Dyspraxia affects around 6% of the population yet most people don’t know what it is.
‘When people have heard of it, they assume that it’s something you have in childhood – but it doesn’t disappear at 18.
‘People get better at managing it, or they avoid things they find challenging – I just don’t own fiddly clothes or dainty shoes, for example. There’s very little research into the experiences of adults with dyspraxia, or suggestions for how to make their daily lives more manageable.
‘I think it’s important that people share their experiences, but it shouldn’t all be on individuals to do this.
‘We should have a better funded education system and NHS that can identify dyspraxia much earlier, and continue to offer support into adulthood.
‘Most dyspraxic people I know, myself included, struggle with driving, organising our time, holding down certain jobs, education, and looking after ourselves day-to-day – but the vast majority of us don’t get any social care support or disability benefits, because it’s not seen as ‘bad enough’ to warrant any help.
‘We need to stop austerity and benefit cuts immediately, and have a society where everyone is well-supported to live the life they choose regardless of disability.’
How to get involved with You Don’t Look Sick
You Don’t Look Sick is Metro.co.uk’s weekly series that discusses invisible illness and disabilities.
If you have an invisible illness or disability and fancy taking part, please email [email protected]
You’ll need to be happy to share pictures that show how your condition affects you, and have some time to have some pictures taken.
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