Not all disabilities are visible
“Chronic illnesses are hard to get your head around, even if you’re the one with the condition. It’s hard for anyone to understand something you can’t see.”
Our Humans of Xero stories are all about showcasing the incredible talent we have at Xero. This month we sat down with Liz Crump, People Experience Business Partner in the UK, to talk about her experience living with an invisible disability, and the impact of working remotely during the pandemic.
What does disability mean to you?
Sometimes people think ‘disability’ only refers to people using assistive equipment, such as a wheelchair. In fact, many people live with invisible disabilities that aren’t obvious to others. This may include chronic pain or fatigue, low vision, hard of hearing, mental illness, conditions like diabetes or inflammatory bowel disease, brain injuries, neurological disorders and more.
Some invisible disabilities will become more obvious once you get to know a person better, but many may be completely hidden unless the person chooses to tell you.
Tell us about your personal experience of disability
Seven years ago, I bent down to pick a towel up off the floor and damaged three discs in my spine. This has caused ongoing nerve pain and a diagnosis of Degenerative Disc Disease. I’ve had two injections to block my nerve roots and spinal surgery. Despite these treatments, I’ve been in almost constant pain since that day.
Before this happened to me, I didn’t know what chronic illness was. If someone had stood in front of me and said ‘I’m a disabled person’, I wouldn’t have understood. Chronic illnesses are hard to get your head around, even if you’re the one with the condition. It’s hard for anyone to understand something you can’t see.
It’s very unlikely my back problems will ever be totally fixed. With my condition, I’ve been told by doctors to focus on managing the pain rather than trying to fix it. It’s been a real challenge for me to accept this — and if I’m being totally honest I don’t think I have fully accepted it yet. But I’m getting there.
How has your disability shaped the way you work?
I’m based in the UK, so I often have both early morning and evening calls with teams in other regions. The mornings are so hard — you wouldn’t believe the effort it takes to get up and get on an 8am call. Just drying my hair hurts. Everything hurts. At the other end of the day, a 9.30pm call means I can’t take my muscle relaxants, which in turn means I won’t sleep well.
Everyone is really understanding if I say ‘I can’t do that call tonight’, but I don’t want to miss out on these conversations! I have to manage my pain and my disability rather than letting it stop my life.
A few years ago, I was carrying something heavy from the office to my car. I remember two amazing guys offering help. I was in pain, but it was super hard for me to accept help as it made me feel like I wasn’t coping. My back condition often makes me feel weak. I know that’s not the truth, but when my emotions are high and every day feels like a struggle, it’s an easy feeling to believe.
How does your physical condition affect your mental health, and vice versa?
In the past, I’ve had people walk over and just take something off me, saying ‘you can’t lift that because of your back’. People’s intentions are always good, but sometimes it oversteps the line of offering help. No one should tell anyone what they can and can’t do. Personally, I’ll do everything I can until I can’t. It might be good for my physical health not to pick up the heavy box, but it’s actually detrimental to my mental health and wellbeing.
If I let other people help every time I was in pain, then I wouldn’t do anything myself. Because most of the time, everything hurts. It hurts me to get off the sofa, it hurts me to walk to the kitchen and it hurts me to make a cup of tea. I have to really work and push myself to not stop doing things because I’m in pain. As human beings, we are solution focused. We want to fix problems, but the challenge with chronic pain is that it often can’t be fixed — not quickly anyway. That said, I do recognise when the pain reaches a level where I need to stop and rest.
There’s so many everyday things that most people wouldn’t even think about that are really stressful for me. Going to the supermarket is really tough. You don’t realise how much twisting and bending is involved in picking up your food shop. I find the tills hard too, as I need to bend to get things out of the trolley. Packing the shopping hurts, and it’s stressful because other people want you to move quickly — they can’t see that I’m in pain and need to go slow.
Stress can make the pain worse, but the chronic pain causes me stress. One thing that has helped is mindfulness, I just need to remember to practice it! If i think about the future, it can be scary as I worry about my condition getting worse, but I try not to let my mind go down this path and instead focus on staying present and managing the situation right now.
What has your people leader and team done to support you?
The best thing my people leader, Jen, has done is just listen. She doesn’t make assumptions, or push me to share more information about my condition or how I’m coping. She also doesn’t tell me to do things quicker or in a particular way. She’s just ready to support me when I need it. For me, that is the biggest help.
I was so nervous when it looked like I may need a second operation a few years ago. I remember Jen saying, ‘we will find a way to support you’ and just feeling the weight lift off my shoulders. That was incredible.
Just before COVID-19, I attended a six-week pain management course. Jen was so supportive and gave me the time off I needed to attend that. It was one afternoon a week for six weeks, but she helped me manage my workload so I didn’t have any additional stress. That alone really helped. I learned a lot from the course, mostly around how not to let the pain take over my life.
It was the first time I realised that medication wasn’t going to be the answer. The medication I was taking caused all sorts of side effects, but it didn’t actually relieve me of the pain. Every time I saw a doctor, another tablet got added to the list and at one point I was taking up to 14 tablets a day. It’s taken me almost a year to come off all the medication. My pain hasn’t increased and I feel less ‘blurry’ now, so I focus on managing the pain in other ways.
My team is also really inclusive, which helps me so much. They are supportive, check in on me regularly, and recognise when I’m struggling. They also let me know that there’s no pressure to keep going. But they don’t tell me what to do, which is really important. They just give me choices.
What impact has working remotely had on you?
From the minute we knew we’d be working from home, Jen made sure I was organised and set up with a supportive chair. The Xero work from home allowance also meant I could get a sit-to-stand desk extension, which has been really helpful.
But what I have appreciated most during this time is the kindness. People don’t question why I don’t have my camera on, when I need to sit in a different position or on my swiss ball. I can just be 100% myself and bring 100% of myself to work.
To be honest, it’s been good working from home this year. Although I miss my team, I don’t miss the stress of driving and parking. On bad days, I struggle to walk from my car to the office. So for me, working from home has actually been easier in many ways. I don’t have to worry about the commute and there’s no time pressure to get out of the house.
Why is a supportive workplace culture important to you?
I’ve had so much support from Xero, and in return they have my loyalty. I’ve never worked so hard and been so motivated, because I want to give back to the people who have supported me. So I want to let managers in other companies realise the impact they have on their people’s lives, both inside and outside of work. And that’s whether you’re a disabled person or not. What happens at work has such an impact on how you show up outside of work.
I’m generally a cheerful person, but it can be really hard some days. Having a supportive work culture makes it so much easier. If I were working for a company that didn’t have flexibility, or sit-to-stand desks, or ergonomic equipment, or I didn’t have a supportive manager and work with a team of people who are kind and helpful — I don’t think I’d be in work. I’d be in a very different position in life. I am eternally grateful to Xero, and Jen and my team.
How can individuals be more inclusive at work?
Ask questions, rather than make assumptions. Challenge your unconscious bias. I’ve had many experiences where people have told me I couldn’t do things. For example, I once wasn’t given an opportunity to take part in something, because they thought it wouldn’t be good for my back. Although it was said with good intentions, that person made an assumption about my ability.
I remember feeling so rubbish about myself. I felt like I had failed before I had even been given a chance, because somebody had decided for me whether I could do something. What would have been better is if the person said, ‘I’m worried this might not be good for your back, what do you think, and how can we make it work?’
Act with kindness. If we do that, then chances are we’re never going to say or do anything wrong to people with invisible disabilities like mine. I’ve had people make judgements and comments when I’ve parked my car in a blue badge space (disability permit parking), because they can’t see the pain I feel or know by the time I get back to my car it’s going to be a struggle for me to get back in. That’s not kind. If you act with kindness, you can’t go wrong.
I’m really open about my back problems, but often you won’t know about someone’s disability unless they tell you. It’s a personal choice whether or not someone shares that information. There’s so much fear when it comes to managing invisible disabilities because it’s something a lot of people don’t know about. But it doesn’t stop people from being kind. If you have an inclination that someone is struggling with something — be kind. If you think someone is not OK, ask how you can support them. It doesn’t matter whether they have a disability or not. We should be kind to everyone, every day.
