What I hate most about work is the prospect of having to shake hands with people. That’s not because I’m antisocial. It’s because my hands, like much of my body, are riddled with arthritis.
A handshake is about as common a custom you’ll find in business or in life. But for me, it involves someone taking hold of an already painful and damaged set of joints, then squeezing and shaking them for an indeterminate amount of time.
When I told a room of MPs this earlier in the year, the point was not to lecture a room full of politicians on their handshake techniques, but highlight that every person with a long-term condition like arthritis has a similar story to tell – where business culture, workplace etiquette and policy aren't compatible with our conditions. (Just try going into a meeting and refusing to shake hands with people and see how far you get!)
Of course, for most people with arthritis the challenges aren’t as trivial as the odd brutish handshake. The problems run much deeper.
Real high and lows
I was diagnosed with juvenile rheumatoid arthritis (also known as juvenile idiopathic arthritis) when I was 12. That was 20 years ago. It’s been quite a journey since then, with some real highs and lows – from needing walking sticks to move around to going to Parliament to talk to MPs about ways to improve the support available for people with arthritis.
From the tears because people told me I should give up work and writing, to setting up my first business this year.
I class myself as hugely fortunate to be among those who are able to work, but I'm all too aware that things could have turned out very differently, and on a number of occasions when my condition was at its worse, I could have let it get the better of me and turned my back on work.
I'm glad I didn’t and I'm thankful to those who helped me along the way.
We’re not just statistics
In reality I shouldn’t be here. I'm perhaps the exception that makes the rule.
I've known far too many people over the years who would have loved to have stayed in employment but have either given up on the system or the system has given up on them.
They're now part of the stats in the Government’s new consultation paper on work and disability, on the large number of people with conditions like mine that are out of work.
Since I first started work, there are countless occasions when I could have fallen through the cracks and become one of those stats. But I can point to three main factors that have kept me in employment:
- The number one factor is the NHS. Support and perseverance from the team at Aintree Hospital over the past 20 years has changed my life. Without them, I wouldn’t be able to get out of bed every morning, let alone get on and live a relatively normal life.
- The financial support from the Government, allowing me to claim disability benefits for a short period, was a major turning point. It meant I knew I had transport to get to hospital appointments and to work. It may not have been huge amounts in terms of pounds and pence but it gave me enough stability to be able to take stock and reassess my life and what I wanted to achieve, rather than operating on survival mode. It also gave me a purpose, to become self-sufficient and get off benefits (which I did within 18 months).
- Finally, I've worked with supportive bosses. My condition was never a factor. And crucially they let me develop a work-life balance that fitted around what I was physically capable of doing. They showed faith in me, and I repaid them with hard work.
Because of these three factors I was able to survive and then thrive in employment. If you removed any one of them, then I very much doubt I would be in work.
If we could find a way of getting those components to work more collaboratively, then we could maybe turn the 10-year journey I've been on into a much shorter one for future generations.
I was looking back through my diary to last year, and between appointments with my GP, physio, consultant, rheumatology nurses, orthopaedics, bloods and infusions, I had around 35 appointments in total.
That means that I've had to look my employer in the eye and convince them it's a good idea to hire me, or give me a promotion or even a pay rise, knowing that I can only work 11 months a year, plus my usual holidays – with no guarantees about my long-term health.
If my bank won’t even insure me, then we have to accept that employers running small- and medium-sized companies are taking on a risk, and make it easier for them to get the support they need to take on staff with long-term conditions like arthritis. That means gearing services to allow me to spend more time in the office.
Working with arthritis
Earlier this year I was asked to talk to MPs in Parliament about Arthritis Research UK’s Working with arthritis policy report, and share my thoughts on the Government’s ambitions to close the disability employment gap.
I’m sure most politicians would vouch that living in constant fear that your career may be snatched away from you due to circumstances beyond your control makes for a challenging working environment, but this is the reality facing thousands with long-term conditions like arthritis every day.
Around 10 million people in the UK have arthritis and other musculoskeletal conditions – yet only 60% of those of working age are in employment, 20% lower than the employment rate for people with no medical condition. That’s a huge number of people locked out of the labour market, in most cases through circumstances beyond their control.
The vast majority of people with long-term conditions want to work. But there comes a tipping point where the care we need from the health services, our physical and mental capabilities, the support available from Government and how we're expected to operate and deliver in the workplace no longer align.
Closer collaboration between Government’s health, work and business functions and employers is central to creating more scenarios where people can stay in work for longer. More support for small businesses who are often desperate to do the right thing but are taking on the biggest risks would be welcome.
Having chatted to a few friends with similar conditions there is one buzz word that continually crops up, and that’s flexibility. And in truth that's all many people want. A bit of flexibility in the workplace gives us the chance to compete on a level playing field.
For too long I tried to bend my work life (and my private life) around my condition. Around the hospital appointments, around pain management, around the anxiety.
I quickly learned that if I did that the game is rigged against people with arthritis. Ask us to do a 9 to 5 job on the same terms as someone without arthritis and you're setting us up to fail.
Playing the game on our own terms
This is the essence of the challenge facing Government if it's serious about helping people with long-term conditions like arthritis to find and remain in work, and closing the disability employment gap.
We need a fundamental shift in how we think about employment, that gives people with conditions like mine the security and flexibility to not just survive, but thrive in the workplace.
We have to be given the chance play the game on our own terms – to bend our condition and the treatment and appointments around what we want to do and achieve in our careers as much as possible.
t’s a culture change that won’t happen overnight, but the benefits are without question.
Knowing how close I was to falling through the safety net and out of employment all those years ago gives me a unique take on coming to work each day. Having the opportunity to be in work and be fulfilled by work has made a massive difference to me.
I’d urge anyone reading this to join Arthritis Research UK’s Work matters to me campaign, and ask the Government to make work and welfare a level playing field for people with arthritis.