Meri Williams - Being CTO While Navigating a Disability

Leaders are often expected to be superhuman, which also means being infallible. But leaders are decidedly human. They get sick just like the rest of us. They also get diagnosed with serious and chronic illnesses. Having a disability at work can be challenging for anyone. Navigating chronic illness while also carrying the responsibility of leadership can feel overwhelming.

I’ve known Meri Williams, CTO of Pleo for many years through our common work with LeadDev (where I lead a workshop at their LeadingEng event). I was happy Meri was willing to talk with me about what it’s like being a CTO while navigating Ehlers-Danlos – a painful condition that can be debilitating. During our conversation we talked about how the limitations of a chronic illness impacted the way they saw themselves, how they changed their leadership style, and their wisdom for those who find themselves newly diagnosed while leading.  

Can you introduce yourself for those who don’t know you? 

I'm Meri Williams. I'm a South African, but live in the UK. Right now I'm CTO of PLEO. I was previously CTO at Healx, Monzo and Moo. So I've been in a few CTO roles in the last few years. I chair the LeadDev Conference, which is a leadership conference disguised as a technology conference. There’s also the LeadingEng conference for Directors and above and Staff Plus for senior individual contributors. 

They’re incredible events, such high quality.

Yeah, they're amazing.

You've been CTO a few times. What do you find most challenging about the role?

I'm often brought in to make a change – either they’re about to massively scale or something isn’t scaling well with their tech platform or the team. I'm usually brought in by the board or by the exec team to make some change happen. Not everyone on the team agrees that change is needed. 

Someone like me can be like the big bad wolf coming in. Some think I'm going to be really corporate because I spent the first 10 years of my career at Procter & Gamble. I think they’re worried I’m going to make everything really boring and take away the magic of an early stage startup. Though when people meet me and see me in my kind of funny t-shirts and jeans and sneakers they’re a little less worried that I'm some kind of corporate shill.

So you often come in when they’re scaling?

There were 50 people in the tech team and they wanted to be 150 or 200 within a year, which is pretty major scaling. The great joy at PLEO is actually that they're already at the scale that they want to be at. Now it's about stabilizing the team and making sure that the systems and the processes scale really well. It's a nice change for me.

I believe the phase of business is so important to consider for leaders. It’s important to understand where you’re best. I tend to do really well at scaling startups. I enjoy trying to corral the chaos. 

Yeah, the phase after you is my sweet spot. I like when scaling has happened and it’s becoming more intense and more structure is needed. I'm autistic and so my brain works that way a bit. I'm also ADHD, so I'm actually pretty comfortable with chaos. That combination of things comes together in a neuro diverse brain quite well. 

I would suck at the early days. Zero to one is too much chaos for me. I need a bit more stability. I need it to be the right thing to do, to do the things right. When you're really early stage, you can build shittily and it's the right thing to do. It's super smart to build as fast as humanly possible. You’ve got to figure out what your customer really needs. It's super sensible to build things in a way that is suboptimal. I really like my good engineering practices so I'm better to join when it’s time to invest in tooling, developer experience and that kind of thing.

Did you expect that change management would be such an important part of your role?

I thought it was something I was going to leave behind when I left Procter & Gamble after 10 years. I  was thinking about going to either Google or Amazon or big tech in some way. I ended up joining the government digital service that built Gov.UK, which is this huge success story in modern digital government. So I became a civil servant, which was almost the opposite direction of what I was intending to do. It  taught me that I can navigate huge organizations, but I find it quite stressful. I’ve been surprised how useful the skills I developed at P&G in navigating scale-ups. 

What’s most rewarding about being CTO?

The most rewarding part is a combination of harnessing the brilliance of a bunch of engineers and making it translate into something for the business. Having technical excellence is one thing. The ultimate thing is that you have great engineers building great products that really serve user needs and help the company to succeed. Harnessing the imagination and innovation is really rewarding. 

You manage a number of health conditions. Can you share a bit about that? 

Sure, happy to. From a neurodiversity point of view, like I mentioned, I'm autistic and ADHD. The autism diagnosis was not a surprise at all. I got it in 2019. I had managed enough people who were autistic over the years to really recognize myself in them as well. 

The ADHD though was totally left field. I only got diagnosed in 2019 very late career and only really got diagnosed because I I gave up coffee for six months. It turns out I had been self-medicating with caffeine in a pretty major way and didn’t know it. I decided to give it up because my sleep was bad. It made me unproductive and I've never been unproductive in my entire life. So I ended up in this kind of crisis point and that's what led to the diagnosis. I almost burnt out because of it. 

The much bigger thing is that I have Ehlers-Danlos syndrome, which is a hereditary connective tissue disorder. It basically means that the blueprint my body has for collagen is kind of fucked up. Collagen is everywhere. It's in your skin. It's in your internal organs. It's in your ligaments and tendons. Although my body produces enough collagen, the structure of it is inadequate. 

What that means is that I wake up with joints dislocated most days. So my morning starts with putting joints back in place. Very often my fingers and my wrists, quite frequently my knee or my shoulder as well. On a really bad day, it might even include my hip or my ribs. My hip and my ribs are the ones I can't kind of deal with myself. I've over the years learned a lot of ways to fix these things on my own. So I don't have to go to the ER every time one of these things happens, which is useful. 

It causes lots of issues with your central nervous system. It's pretty kind of all encompassing. It can also cause chronic fatigue and fibromyalgia like symptoms. It can cause lots of other things as well. So Ehlers-Danlos is the most challenging one to deal with really. But I'm pretty lucky I've got a good team around me. And in the last three, four years, I've got a good meds regimen that's made things remarkably better. It keeps me functional and able to walk. Luckily I’m not in a wheelchair so I’m not facing really serious mobility issues with it just yet. But it's something that there's basically very little treatment for and it'll get worse as time goes by.

(When I got diagnosed) I was trying to pretend that nothing could stop me and I could bust through any barrier. When the barrier is in your own body, it's not healthy to try to bust through it. It took a long time to accept.

Yeah, we’ve talked about this but I have chronic fatigue syndrome and fibromyalgia. I'm also lucky that my condition is relatively mild compared to others. 

When did you get your diagnosis with Ehlers-Danlos? 

It was Christmas 2012. Right at the end of my time at GDS. It was actually the day of the GDS Christmas party. So I was not looking particularly happy. A lot of people were worried about why. I was like, it's nothing to do with the party. I promise. Something's going on. I got diagnosed because I'd had a hundred shoulder dislocations in two years.

Wow, that sounds painful.

Yes, very painful. I got a tear in my shoulder socket from like 12 o'clock to seven o'clock. The shoulder kept popping out and popping out. One of the challenges with allostomalus is you eventually get diagnosed by rheumatology. But if you don't look like an arthritis case, it's quite difficult to end up with rheumatology. So you end up, so I went through years in different departments, you know, in the ortho department of the hospital where they were trying to figure out whether they should try and do surgery to stabilize the shoulder or why it couldn't work out why it was dislocating all the time. 

Eventually I ended up with a diagnosis because of Twitter. I happened to follow someone who is an amazing designer. She saw me complaining on Twitter about my shoulder dislocating all the time. She DMed me and just said, hey, I know we don't know each other that well, but. I have seen you talking about this happening all the time.I'm not trying to diagnose you from afar or anything, but I have this thing called Ehlers-Danlos, and it sounds very similar to what you're going through. Maybe you should look into it. 

It takes on average 10 years for people to get an Ehlers-Danlos diagnosis because it's such a weird set of symptoms. So I owe a lot to her because it probably shortcut my process of getting a diagnosis by giving me the cheat code by suggesting I look into it. I was lucky to have two GP doctors who had heard about this in medical school. Before that I had a bunch of doctors who had never heard of this. They were like, “what are you talking about?” I had to bring in all my paperwork and show them the letters from the consultants and prove to them that it was a thing. It's frustrating to have a rare condition because there's also just not a lot of research into trying to fix it because it's not economically very viable to invest in.

Chronic fatigue syndrome, also known as myalgic encephalomyelitis is very similar. It's a diagnosis of exclusion. It’s a series of seeing doctors and doing tests to get diagnosed. It was hard to convince people that there was something really wrong with my body that was just in my head. It’s so tough.   

Yeah, it's really hard. I mean, mine was easier. I know a bunch of people with ME and CFS and I know mine's easier because at least my joints are visibly popped out, right? It's very painful, but it is very visible. So in some ways that was useful. But  yeah, there were a bunch of times that people just thought I was incredibly clumsy. And I was like, I'm really not. Waking up in the morning and there's joints that are out of socket is a really weird experience. It’s tough when people don't believe it. 

I had long COVID for 18 months which is extraordinarily similar to ME/ CFS. I had five weeks in the middle of 2021 where I was awake maybe three hours a day and I could not do anything during the three hours I was awake. I was unable to make decisions, I was unable to decide whether I wanted tea or coffee, I couldn't watch TV, I couldn't pay attention enough. When I talk to friends who've had chronic fatigue or ME, they talk about having that for months. I only had it for five weeks. I can't imagine the people who deal with ME and CFS for years and years and years with no hope on the horizon. It's horrendous.

Yean, my illness comes and goes so I go in and out of disability. I don’t always know when it will happen so there’s a lot of uncertainty and ambiguity. Being a leader while having a chronic condition is a whole other level. What was it  like after you got diagnosed being in leadership? Was it relieving? Was it frustrating, scary? What was that like?

It was super scary at first. I took six months off after I first got diagnosed. I'm the primary earner in my marriage. We were living in London. It didn't seem like it was even possible that we could stay in our house if I were not working. So it was pretty scary. I took some time out to deal with the mental side of it. What if I don't have, you know, 40 more years of work in me? What if I've got 10? How does that change the plan? How does that change the approach? That was really scary. 

I  was a bit of an idiot for the next many years. I just tried to rail against it for a long time. I would push myself and do too much and... end up, you know, getting three hours sleep and then being surprised that I had major dislocations the next day. One of the things that happens with EDS is you do a bit of damage every day and you have to heal overnight. So if you have bad sleep, then you end up with a compounding injury that gets worse and worse. I fought against it for a long time. That was really not sensible. I hit a point when someone on my team who I really respected said, “Why did you come in today? Boss, you look terrible. You can't be here when you look like you wanna murder everybody because you're in so much pain.” One of the challenges I have is when I'm in a lot of pain, people can misread it as anger. She just went you you should have stayed home today. We are not better for having you at 20. We need you at 100 percent when you can be. If we need to adjust to have you we'd rather have you three days at 100 percent than five days at 20. 

It made me realize that  you can't fight something that is just so much stronger than you. Fighting exhaustion is kind of ridiculous, right? But it's very tempting to do, but it doesn't work.

Oh, I've tried it. Mine condition is really all about energy management. It’s the most important thing. Before I got sick, I would have called myself Type A. Now I'm a recovering type A. I’m curious if you relate. Had you been driven like this before you got sick? 

Yeah, I've always been super super driven to the point that my family are a little like “Where did this one come from?” The rest of the family are a little bemused at how driven I am. I was super driven academically, very successful in work. I had a hundred million dollar budget and a 300 person organization when I was 27, which is frankly ridiculous. 

(When I got diagnosed) I was trying to pretend that nothing could stop me and I could bust through any barrier. When the barrier is in your own body, it's not healthy to try to bust through it. It took a long time to accept.

When I couldn't  just do those extra hours or just finish that over the weekend or make sure that the deck got finished or the document got written or the spreadsheet got sorted out or the code got deployed it felt like an attack on my identity. I wasn't who I thought I was anymore. The hardest thing about getting the disability diagnosis was, was just not feeling like I was who I was anymore.

I have tears in my eyes because I felt similar. It’s very interesting when leaders who are often used to achieving find their limitations. It can be devastating. 

Yeah, hugely. It was an attack on my identity. I identified so much as someone who would work incredibly hard and get shit done and have an impact and would always push through whatever adversity there was. 

I'm a woman working in tech. I'm actually non-binary, so that's even worse. I'm autistic and I'm physically disabled.  I have ADHD, I'm queer and my wife is British. I’m South African so I’m an immigrant. I had overcome so many barriers to get even as far as I had at the beginning of my career. I'm not the first ever to go to university in my family, but I'm not far away from that. I'm the first ever to make it into management in the whole family. So this kind of hardworking, achieving element of myself was such a huge part of who I was. 

When I couldn't  just do those extra hours or just finish that over the weekend or make sure that the deck got finished or the document got written or the spreadsheet got sorted out or the code got deployed it felt like an attack on my identity. I wasn't who I thought I was anymore. The hardest thing about getting the disability diagnosis was, was just not feeling like I was who I was anymore.

Yeah, the physical part is hard but the mental part really messed with my head. It was the harder part in many ways. It seems like you had to rebuild your identity as a leader and the way you did leadership.

Pretty fundamentally, yeah.

You have to retrain your brain from thinking you're only valuable if you work harder and more and crazier hours than everybody else and tick more things off on the to-do list than everybody else and say instead, what's the impact I could have if I set everything up around me for me to be successful? 

What were some of the big changes you made to lead differently?

One of the things I did was only having meetings four days a week. I did this because one of the challenges was I'd wake up in the morning, not be in a decent enough state to go into work.I’d look at my calendar and be like, shit, I don't have any free time until three, four weeks from now. So everybody who needs a decision from me today is going to get delayed by a month. That's unacceptable. I can't do that to people. 

I now technically work a four-day week, but what that means in reality is Mondays I have no meetings and so if I am ill on any other day, the longest that anybody has to wait for a slot if I'm, you know, ill on a Wednesday, it's only next Monday because I'll reschedule everything for that Monday. Having fire breaks in my calendar is one of the things. 

I’m also much more defensive of my out of hours time. I do social stuff, but I'll tend to only do it one day per weekend. I need at least one day to restore a bit. I’m terrible at relaxing so I’ve tried a lot of different things. Playing video games and building huge Lego sets are two things that are almost like meditation for me. I struggle with meditation itself because a lot of it's about feeling grounded in your body, which when your body is just a whole lot of pain that you're having to ignore in order to function. anything that makes you hyper aware of your, of your, the state of your body is actually like, no, this is just making me focus on how much everything hurts. That's not relaxing at all. 

It was important to find restorative activities. I have always liked swimming and have structured a lot of my holidays around going snorkeling or diving. Being in the water tends to help because it's just a lot of non load bearing time for your joints, which helps a lot. Then I structured in a lot of time where I get medical treatments. So I have probably less than half the sort of personal time of anybody else because so much of it is filled with medical appointments and these things that are essential for me to do to continue functioning. But I've now got to a balance point when it is okay. 

The other thing that really helped was one of the things the NHS offers if you have a condition like I do where you're in pain and there's probably not much hope of it going away, a good pain management course. It teaches techniques for coping with pain — about accepting the reality of it and letting some things flow through you. Retrain your mind to be more resilient in the face of constant pain. I found it really helpful. My favorite thing they say in pain management is pain is mandatory, but suffering is optional. I’ve adopted that philosophy. I think I used to suffer a lot and I've now got a lot better at not suffering from the pain.

Oh, I feel that. Your pain is like my fatigue. Learning how to suffer less has been really important. Besides adapting your schedule, were there other parts of your leadership style that you had to adapt? 

I used to be the kind of leader who would always do more than their team. So nobody could ever imagine that I was asking someone else to work harder than I would work. I would never ask anybody to ask as hard as I would work. I would never put that level of expectation on someone else, but somehow I would always put it on myself. 

I've become a bit more realistic about that. I continued, I think, like a lot of very driven people to struggle with delegation, but I am actively working on being better at it. I realized there were some things that I thought was just boring work, I would do myself because I didn't want to inflict it on anybody else. At one point someone said to me, “Maybe some of the rest of us would learn a lot from that. Where to you it's just boring work.” Now I ask myself, who will learn the most from doing this? Who will gain the most from the experience of dealing with this? The other thing that really helped was Laura Hogan wrote a great messy delegation worksheet, where she said, you know, a lot of the time our tendency is to try and have something perfectly formed and neatly tied with a bow before we'll hand it over to someone else. But actually the more rewarding thing is to be delegated a problem to solve with a lot of open-endedness about how to solve it. It doesn't have to be tied up with a bow. It can be a bit messy. (As a CTO) my people are hugely competent and need interesting problems to solve. I think the other thing that I've grown to depend on a lot is having a good EA, which is a massive privilege. But it is really helpful for  someone to look ahead and and be more realistic on my behalf of how many meetings I'm going to do in a single day. Otherwise sometimes I will stack 14 things back-to-back and be like no that'll be fine I don't need lunch.

Yeah, so there's a bunch of stuff structurally. There's also been some things around just getting better systems for capturing topics, making sure that I do talk things with my leadership team, and that kind of stuff. And then spending time developing people. I’m really passionate about and really care about, so it's nice to spend the time on that. It really pays off to spend the time developing people, because they can then, will and do take on more, because you've spent the time to build them up.

I used to be the kind of leader who would always do more than their team. So nobody could ever imagine that I was asking someone else to work harder than I would work. I would never ask anybody to ask as hard as I would work. I would never put that level of expectation on someone else, but somehow I would always put it on myself. 

I think one of the things that we misunderstand about leaders when we struggle with delegation is that it’s about ego or control. I think it's often about a sense of responsibility and wanting to make sure that things go well and that we're doing well by people. We have to shift our brains that messy problems are good for people’s growth.

Yeah, I think too that you have be able to delegate and go, but (let them know) if you need something or if you get stuck or... want to pair on what the best approach for this is, I'm totally here and we should absolutely do that. A lot of times people see something delegated to them as a test, and so I think taking that feeling of it being a test or a trial, taking that feeling away is really important as well.

What wisdom or advice would you pass along to others who are newly diagnosed and find themselves leading? 

I think I'd echo a couple of things that I've said. 

Think about whether you at 100% for fewer days is better for people than you at 20% or 30% for every day. 

Think about how pain is mandatory, but suffering is optional. What can you do to help reduce your suffering and suffering of those around you? 

The hardest part of this is accepting limitations on yourself. We've all grown up in a world where we're told we can be anything if we just try hard enough. Disability is an actual restriction on some things that you're able to do. As hard as it is to believe, it doesn't make you lesser. You just have to find different ways to still have the impact. people are surprisingly willing to shape around you in order to let you have that impact. 

You have to retrain your brain from thinking you're only valuable if you work harder and more and crazier hours than everybody else and tick more things off on the to-do list than everybody else and say instead, what's the impact I could have if I set everything up around me for me to be successful? 

From the number of exec coaches I've talked to, I think this is a challenge many senior leaders have. They get to senior leadership by being incredibly hardworking and having high impact and being reliable at getting stuff done. But then the best way to be a really senior leader is often to set yourself up to be in a context that enables the bits of you that are brilliant to really shine. and the parts of you that are less developed or less brilliant to be compensated for. And sometimes that works out really well for everybody. You don't have to be all things to all people all the time, but a lot of our journey so far has taught us that we do have to be. So letting go of some of those limiting beliefs is one of the most challenging things I think.