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Those who have had experience with, or have had exposure to, chronic illnesses such as cancer, depression or autoimmune diseases may have also heard of the spoon theory.
The spoon theory is a metaphor to explain chronic illness or disability – as spoons are a unit of measurement, they’re used in this theory to describe how day-to-day activities cost people varying amounts of energy. While healthy people have an unlimited number of ‘spoons’, those with chronic illnesses only have a limited number for the day and so have to use them carefully.
The original blog explaining the spoon theory, But you don’t look sick, puts an emphasis on how the struggles of those with chronic illnesses are not always apparent.
For many, chronic illness is invisible, and when it comes to looking for work, the adaptations firms may need to make to cater for people with chronic illnesses means this group of skilled workers is often ruled out completely.
But as the technology skills gap widens, firms cannot afford to rule out large groups of talented workers, especially when the tech sector is so accustomed to providing staff with flexible working.
To help those who may otherwise be invisible to firms looking for talent, charity Astriid helps connect firms looking for skilled workers with what it calls the Invisible Talent Pool – those with chronic illnesses who still want to work but cannot have a traditional job.
Victoria Clutton, SharePoint co-ordinator for Altran UK, is one of the people Astriid has helped in this way. She explains her own personal fatigue symptoms as having to deal with flu-like symptoms after even basic levels of activity.
“Imagine if you did 15 minutes of very basic housework, or reading, and you had to deal with a level of flu-like symptoms as a result of that for a couple of hours,” she says.
Clutton suffers from Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), a long-term illness which can include symptoms such as hypersensitivity to light, sound or temperature changes, feeling sick after activity, and a limitation of energy.
For people with Clutton’s illness, it is not uncommon for some to be bed-bound, or to use walking aids or wheelchairs to get around, while others just about manage to hold down a full-time job while having to “sleep all weekend” in exchange.
Clutton is somewhere in the middle, although she mentions how the varying severity of the illness affects the ability to talk to people and to have a set routine, adding that having to pretend not to be sick is exhausting.
Roads less travelled
As is often the case for those with chronic illness, the desire to work is there, but the ability to work full time is not.
“I never quite gave up on the idea that one day I would have a job. It wasn’t that I decided to work, I just finally came across a way that I was able to work,” says Clutton.
She found a job advert from Astriid on Twitter, and was initially not sure about applying as the charity also has a focus on people who have previously had a career, but have become chronically ill later in life with diseases such as cancer.
People in this situation, usually in their 50s or 60s, have a lot of knowledge gained over their years of work, and are willing to take on odd jobs as long as they can have flexibility.
Before she came across Astriid, Clutton had hit several barriers when trying to find work. She has been suffering with CFS/ME since the age of 16, but due to overhauls to the benefits system, she was declared fit to work despite the different views of her GP and several specialists.
For Clutton, it seemed every option came hand-in-hand with a problem when trying to find a “sensible path to work” through the Job Centre, whether that be standard employment, online work over the internet or self-employment.
For example, doing data entry online for a company in India would pay less than minimum wage, and the Job Centre were unable to advise Clutton on whether or not it was legal, telling her to take the job and wait for a decision on whether or not she would be prosecuted later.
She considered starting her own crafting business, selling items on Etsy, but realised she would not always be able to reach the minimum number of hours a week, and if she could not show the Job Centre payment for goods within two weeks, it would not officially count as work.
This “completely impossible situation” is not uncommon for those who are chronically ill looking for work.
After around 15 years of trying to look for suitable work, Clutton came across Astriid, which helped her to find a role at Altran, where she now works remotely, around eight and a half hours per week. Her role is to maintain, update and overhaul the firm’s legacy SharePoint system.
Outside of meetings, Clutton has full control over how much she works, with no hard deadlines and no constraints over when she works.
She writes notes on tasks and gives feedback over the internet to eliminate the need to talk to people if it isn’t necessary.
She now also has a degree in maths and computer science, something she managed to work on part time through the Open University.
The role offers Clutton the flexibility she needs to work enough, and when she feels like she’s struggling, she uses her holiday to rest for a week and build up the strength to start again.
Explaining her daily routine, Clutton says it’s easier for her to do activities in short bursts, aiming to work in four 25 minutes bursts each day between 12.30pm and 7pm, resting for an hour and a half in between.
While there is no treatment for CFS/ME, there are management strategies and techniques. Having a routine helps, but many with her illness are not well enough to maintain one.
Overlook no more
For Clutton, Astriid has been the “only practical way into work”. This is partly due to businesses working with Astriid being aware that the talent on offer suffer from chronic illnesses, and so need to be flexible about their roles and workload.
Clutton says conversations about roles or opportunities would often be cut short in the past once chronic illness was mentioned, and those who do listen are “surprised” by what they learnt about the “basic realities of what it’s like to live with” a chronic condition.
“I can’t spring it on people later – I have to go up to a stranger who doesn’t know much about chronic illness and traumatise them with all this information,” she says.
“[Employers are] not prepared for someone to come up and go, ‘I’m exhausted all the time and I’m in pain and my life is miserable a little bit, but I would still really like a job’.”
In the past, all of this would have to be discussed before Clutton could even have a “practical conversation about work”, but Astriid’s employers being aware of chronic illnesses before the process starts means skills are more of a focus.
Victoria Clutton, Altran UK
Clutton says the businesses that take part know they need to offer staff hired through Astriid the flexibility to deal with their health issues, and as such develop roles to fit this.
“While chronically ill people need a lot of flexibility, they offer a lot of flexibility back. Chronically ill people are thrilled to work low hours or short projects,” she says.
So how can businesses tap in to the invisible talent pool, and cater to those who can be helpful for the business, but who may need more flexibility than the average employee?
In many cases, creating a diverse and inclusive culture in a firm has to come from the top down, and Clutton highlights that the bosses she has had within Altran have all been extremely supportive of both Astriid as a service and of Clutton.
Highlighting how supportive they have been, Clutton said her bosses have not pried about her illness, have been “incredibly understanding”, and have gone on to be advocates of using Astriid to access otherwise overlooked talent.
Clutton, who is now an ambassador for the Astriid charity, advises companies to look at some of the “niggles, the bits that could be a little bit better”, but that aren’t quite enough of a problem that a full-time employee is needed to fix them.
“If there isn’t enough there to be a full time job or a permanent job, then look at what chronically ill people have to offer,” she says.
Read more about diversity in technology
- Taskforce aims to tackle digital exclusion, which leaves many people in the UK without access to digital technology.
- Paul Hill, head of global propositions development at Experian, talks about the many advantages and few challenges that Experian encountered when working with autistic technology consultants from Auticon.