TED-style talk: Lucy Wright on working with neurodiversity and a long-term health condition

The interview

“So Lucy, do you have any questions, anything you’d like to share?” The interviewers were about to offer me the job.

So, I could just tell them the truth, right?

You know, just say: “Yes. I’d like to tell you, I have ADHD.”

But…sigh.

I didn’t.

Because, things were going well, and I didn’t want to put a spanner in the works.

We’d already covered the skills that would make me a fantastic administrator research project at the University of Exeter. For The Inclusivity Project, no less.

We’d covered my degree in events management. My organisational passion. We’d covered the office atmosphere and the nearest coffee shop.

And I just didn’t want the stereotypical image of ADHD to come to mind.

You know – a Naughty Little Boy Who Has a Condition – I didn’t want that to flash up in their minds, uninvited, probably even unconsciously.

Above all, I didn’t want to be thought of as disorganised.

Because that’s not me.

I’m Lucy Wright, project administrator.

I’m Lucy Wright, part-time student of an MSc in Global Ethics and Justice at the University of Birmingham.

I’m Lucy Wright, lover of rabbits and lists and of walking everywhere instead of commuting.

And I am the most savagely, methodically, thoroughly, consistently organised person you could employ.

I give my pet rabbit a daily activity schedule.

No, I actually do. [Lucy shows a picture of her rabbit’s schedule].

I am organised about being organised.

Efficiency is my middle name and ‘done’ is my watchword.

Spreadsheets are my happy place.

Project management software is more exciting to me than Netflix.

If I had a tattoo, it’d probably be of a cute little to-do list on a post-it note, all ticked off and beautiful. 

Do I sound defensive?

Because I felt I’d have to be. If I said I had ADHD, I’d have to explain how my coping mechanisms have become my identity to the point they are my hard-won superpower. 

Can you see why answering this question honestly was opening a can of worms? 

And, I really wanted this job.

It would mean I got to move from New Zealand back to the UK, getting paid holiday and the power to order whatever I wanted from the stationary catalogue.

And as well as living my values as a project, it would mean I could visit the Cornish Seal sanctuary every weekend! 

I just want to be really clear that I didn’t think The University of Exeter, my employer, would be so unprofessional as to openly draw a line through my name if I mentioned ADHD. Of course they wouldn’t discriminate.

Not in this day and age. I mean, we’re all cool about disability now, right?

Some of us reading this probably have disabilities.

Just to do a little poll:

• As you read this, just give a little nod if you think of yourself as having a disability. Even if I can’t see you. OK. Let’s add more in.
• Give a nod if you have a long term health condition. Yes, now let’s add in another trait.
• Give a nod if you’re over 50. 

Yes, we’re actually talking about a sizeable percentage of the population, and not just margins and minorities now. Especially in Cornwall. 

Admittedly, I was a bit overcautious, playing my cards so close to my chest.

I mean, the interview was for a job that was advertised as flexible, that was about (among other things) including people in the workplace who have a disability.

I didn’t really think of ADHD as being a disability, although technically it is one. 

Part of me just doesn’t really think about my ADHD much.

I was 18 when my mum was diagnosed with ADHD, whereas my mum was in her 40s when she was diagnosed.

ADHD first came up for me at Uni, when a student services person suggested I get checked.

And right away when I had the interview with the psychiatrist, they were positive the description fitted me.

But since I wasn’t diagnosed in childhood, it’s just part of who I am. 

And I just think that’s interesting.

Because if I couldn’t bring myself to mention ADHD in a job interview for a flexible role that said it was equal opportunities, for a project ABOUT inclusive employment, then how much harder must it be for there to be an honest exchange by people recruiting for small businesses, where the risks of hiring one person are that much more costly?

So, I kept quiet about it, and it worked a treat, I got the job.

ADHD first came up for me at Uni, when a student services person suggested I get checked.

And right away when I had the interview with the psychiatrist, they were positive the description fitted me.

But since I wasn’t diagnosed in childhood, it’s just part of who I am. 

And I just think that’s interesting.

Because if I couldn’t bring myself to mention ADHD in a job interview for a flexible role that said it was equal opportunities, for a project ABOUT inclusive employment, then how much harder must it be for there to be an honest exchange by people recruiting for small businesses, where the risks of hiring one person are that much more costly?

So, I kept quiet about it, and it worked a treat, I got the job.

I might have got the job anyway, but I’ll never know about that.

I might have got the job anyway, but I’ll never know about that.

* * * 

The workplace

About six months into my job at The Inclusivity Project, I was standing in the kitchenette doorway at the office. I was there because I needed a break from my desk. 

Like, badly. 

I just had to move, I had to get out of my office room and change my space. 

It’s a feature of my ADHD that I have trouble staying productive in the same space for hour after hour. I get bored, and it drags on my productivity. When I move location, my motivation rockets. It’s true! 

So, my work for The Inclusivity Project took place in a white office, in a department of the University of Exeter Medical School called the European Centre for Environment and Human Health. It’s a wing of Truro’s Treliske hospital, so the office building has a slightly hospital-ish vibe, with those beige wood-effect formica desks and blue padded office chairs, and the polystyrene tiled ceilings and the striplights and the white walls… But I had a nice big desk, in a room with three other people. 

They were diligent and sometimes focused and quiet, and I need to talk and banter as I work. 

I also need challenge. I can’t be productive when I’m not engaged. It’s not that I need entertainment, or to always do creative tasks. It’s that somehow, more difficult jobs are challenging, and more involving. 

I love having an office to go to.

I love the people who I work with and the opportunity to hear about other research going on. 

But my ideal office would be one where the stationery would be brightly coloured to keep me excited, where I could write my ideas on a blackboard wall, and where there would be quiz coffee breaks to keep the dopamine flowing. 

So now that I’ve described my actual workplace, versus my ideal workplace, I think you know why I had gravitated to the kitchen where people were having deep and meaningful conversations about the project’s challenges. 

“I can’t find any photographs for the web site that show depression in the workplace”, moaned Laura, our communications manager. “I need pictures of invisible disabilities, how am I going to do this?”

Laurie and Laura were both there. Laurie was pouring some of the weapons-grade coffee the centre brewed. 

“How did our mental health in the workplace workshop go on Tuesday?”, I asked Laurie. 

“It was pretty full actually, I it’s a popular topic”, he said. “I think the stigma around mental health is changing, but people don’t want to say they’ve suffered from depression in interviews and things.”

Laura said: “I don’t even say I have children in interviews”. 

I said, “I am actually ADHD, but I didn’t mention it either.”

And that’s – fanfare – how I ‘came out’ as neurodiverse. 

Here’s what changed when I had said it: nothing.

Well, nothing externally. But inside, I felt like I had a bit of ownership of it, like I had ADHD for once, rather than the ADHD controlling me.

Looking back, I think the reason I felt able to say it then, and hadn’t earlier, was that I knew my colleagues now, I knew that they were understanding and open-minded.  

And no sooner than I’d talked about that one thing, than I started to get ill.

* * *

Fibromyalgia – the long road to diagnosis

“Look, it says 1 in 3 health conditions are developed in work!”

We used to use a graphic in our power points, that was developed by government.

Then we started questioning it.

Did it mean because of work? Like, repetitive strain injury from clicking a mouse, or other musculoskeletal conditions from sitting for hours for example?

Or even accidents or injuries from work activity?

Or does it simply mean that employers need to understand that they can’t avoid long-term health conditions by giving ill people the swerve in the first place?

Because everyone gets one year older every year, and even if you’re 26 like me, your health situation changes all the time. 

So even if someone has robust health when you take them on, something can change in your body out of the blue.  As I discovered.

For me, it all started when I took part in a ‘walk the night’ marathon with a friend.

We planned to walk to 26.2 miles across London in the night to raise money for Breast Cancer UK and Prostate Cancer UK. 

We trained, not as much as we should have, but we figured all the hills in Cornwall would make up for the fact we hadn’t quite done a full practice run. 

On the 25th mile I tore my plantar fascia and injured the plantaris tendon that runs up the back of my calf. Waddling into work on crutches, I then got a stomach infection.

I couldn’t eat or move, my body went into ketosis, and I had to have keyhole surgery to untwist my bowel. 

A lot of time passed as a blur.

I have had all the following (and if I were any good at rapping, I’d turn this into one:)

3 X-Rays, 3 MRIs, an endoscopy, 

3 different ultrasounds, an ECG, 

an EEG, and CBT, 

and the number of blood tests is over 20. 

I’ve been a patient with gynaecology, 

gastroenterology, 

rheumatology, 

I’ve been looked at by orthopaedics, 

and I’ve seen 3 different physiotherapists.

And after rafts of tests, and two years of referrals and appointments and nonplussed specialists, what was concluded was that …

Drumroll please…

I have fibromyalgia.

The diagnosis took forever. And that diagnosis was actually quick for fibromyalgia, which averages at 5 years.

So as well as being neuro diverse I’m now the proud owner of a long-term health condition too.

Anyway, it made working a little tricky.

At first I was in such shock, I was at home on sick leave for 5 weeks. 

I really tried to get back to normal. But supportive colleagues understood better than I did that I couldn’t just come back to full-time.

The steps next were understanding what work I could do, and how this would affect my position. 

Working with my manager and HR – and I don’t mention that lightly, because working for a bigger organisation like a University that has things like HR departments is already a difference between what I was going through and what someone in a small business in Cornwall might experience – we came to an arrangement where I was able to work when I could and either claim the hours un-worked as sickness absence or unpaid leave. 

Whilst this took its toll on my finances, it did me the freedom to continue in my job. 

I needed that because finding out what my illness was going to allow me to do was a matter of trial and error, for me, and for my employer too. 

It has taken me 2 years to really understand how much I can push my body and when I need to stop, but without the flexibility in my position, I don’t think I would even know now. 

That’s kind of ironic, when I think about it. 

At the start of the project, we were thinking if all employers could stop making rigid, uniform offers and allow work to be more flexible, or from home even, more people could be included in the workplace. People who are talented and whose health doesn’t always allow them to come into an office. 

But, we all thought, that’ll never happen. Small businesses in Cornwall had already told our predecessor, the Beacon project, that it was complex, and it was difficult, and how would they know people could be trusted.  

And then Boom! COVID-19 hit.

And everyone got flexible overnight. Just like that, the revolution we were all waiting for had already happened.

* * * 

Covid-19 and homeworking

Yes, it was flexible, working from home. Woopeedoo. 

I didn’t have to commute. Yay. 

But now, I was also walled up in my flat, coming to terms with my illness, socially isolated. 

There really were times that I wanted to give up. I wanted to quit my job, give up on my studies and stay in bed until I was magically better. 

Sometimes, the pain was so unbearable I couldn’t move. 

Other times I couldn’t eat, or I was too tired to see further than 5cm in front of me. I didn’t feel like me anymore. 

The bits I liked about myself before, were the fact I was active and fun, and I thought highly of my intelligence. 

But I wasn’t any of those things then; I could hardly get out of bed and I couldn’t answer any of the questions watching The Chase. 

That was the point my mental health really suffered. 

My two conditions can feel very conflicting. 

My neurodiverse brain wants me to complete 100 new ideas immediately whilst my fibro fog can mean all I see is a blur. 

Growing up in a generation when your worth is measured against your productivity has made me a really hardworking and efficient employee. However, it has also meant I give myself impossible standards to live up to, which are even more difficult with ADHD. 

It means that putting myself first was a very alien concept. It really has taken me this long to understand the importance of rest. There can be a lot of stigma around ADHD and fibromyalgia and it often comes with connotations of laziness. 

I am finally learning that if I push myself too hard, I am no use to anybody. Maybe before I could have done it all, or maybe that is why I was ill in the first place, but removing my own unrealistic expectations has been the biggest factor in my recovery. 

I have always eaten well, meditated, done yoga, and spent time in nature.

I did all the things I thought I needed to do, except take the pressure off myself. 

* * * 

Lucy’s tips for employers

So employers, listen up, because here’s what you need to know. 

[Link: I have carefully outlined a series of very concrete attitude shifts and actions you can take if an employee has become sick, on our digital resource here.]

But the biggest mind-shift you can make is doable right now. You may not have put your hand up at the start of this talk to identify with being disabled, or older, or having a long-term health condition. I didn’t either. 

But disability isn’t happening over there, to other people. Categories are an illusion. My mum and I share the ADHD diagnosis, we share half our DNA, but we’re completely different. 

So try this:

You know how I asked you to nod earlier, if you put yourself in different categories?

Well, nod again now if you have asthma. Diabetes. Dyslexia. Insomnia. IBS. Food intolerance. Stiff joints. If you have had bouts of anxiety, or depression. If you have tinnitus, or a sight impairment. Migraines. If you care for someone vulnerable. If you have kids to collect from school. If chairs with armrests are built too small for your bottom. If you are menopausal. If strip lights tire you out. 

Just to give you a tiny example of a difference that affects productivity, we talked as a team recently, and we discovered some people work best listening to Public Enemy, and other people get over-emotional if the background music has lyrics and have to stick to ambient electronics. 

People – workers, personnel – are actually human beings. Individuals. 

Businesses are waiting to be told what to do, how to get it right and not get sued. 

We think ‘easy’ for a business means a checklist of reasonable adjustments. We know that the average reasonable adjustment costs about £50. Why? Because the real adjustments aren’t made through checklists. 

You already know what to do: It’s to embrace all of our infinite differences and individualities without sighing and saying it’s complicated or difficult. 

It’s not difficult. You know why? Humans are great at being human. At asking, ‘what would another human being need in this situation?’. 

Say it now. Say it with me. Let’s read it out loud together. 

“What would another human being do, in this situation?”