And why is it important to include chronically ill people in the workforce?
When it comes to inclusion in our society in general- we still have a long way to go. Be it about equal chances in education, the accessibility of public buildings or inclusion in the media. But one area still has a very important role to play: work.
The numbers are staggering: An EU-wide report from 2020 says, that only 50,6% of people with disabilities are employed, compared to 74,8% of people without disabilities. There’s also a staggering difference when we look at unemployment rates: out of all people with disabilities aged 20-64, 17,1% are unemployed. In people without disabilities the rate is only 10,2%. According to studies, many people suffer from this exclusion and the stigmatization in the workforce.
Does it pay off to make our workplaces more accessible?
A wide misconception is to assume that disability or chronic illness is some kind of fringe topic that doesn’t affect many people, and thus assume that measures for inclusivity won’t pay off. This couldn’t be further from the truth! According to data from the latest European quality of life survey, 28% of EU respondents reported living with a chronic (or a long-standing) physical or mental health problem, illness or disability that hampers them in their daily activities.That is not a small number! And assuming that disabilities or chronic health conditions only effect elder people would also be wrong. Chronic illnesses and disabilities can happen at any age, and many are affected while still being interested in an education or career. So, making sure that our universities and workplaces are accessible is not only important from a moral standpoint. By keeping your workplace inaccessible, you are excluding 28% of people who might be able to do a great job and thrive under the right circumstances. By being inaccessible, you basically limit yourself and take away the chance for many skilled people contributing to your company or organization.
The fact that such a high percentage of disabled and chronically ill people are unemployed is not because they are not interested. It’s often because so many jobs are simply inaccessible to them. This can often lead to further stigmatization and a vicious cycle down the road, that can cause psychological issues and existential fears in individuals - a problem that often correlates with being chronically ill, due to a lack of inclusion and understanding in society. There is often a double standard that many chronically ill people experience, where they are being looked down upon and seen as lazy for not having a job - but at the same time, many of them struggle a lot to find employment in the first place due to these stereotypes and discrimination.
Also, it is important to note that some chronically ill people are, at least temporarily, not able to work at all, and they are often put under a lot of pressure to get back into the workforce. Especially during acute stages of illness, this can cause a lot of stress. It is important that these individuals receive the help they need, socially, financially and medically, so that they can focus on their healing without any added stress or threats to cut them off from benefits. The decision on whether they wish to return to work and in what capacity should lie with the individuals themselves, as they know their bodies best, and they should receive all the support they need for whatever decision they make for themselves in order to reach their goals healthily and realistically.
What is the difference between chronic illness and disability? If you are interested in a definition, please see my article: Chronic illness and disability – am I disabled?
So what can we do to make jobs more accessible for chronically ill or disabled people?
Every chronically ill person experiences their situation differently. Even two people with the same condition can have very different experiences. So, if you are hoping for a universal recipe for success here – I have to disappoint you! But what I can offer are different ideas and ways that could offer support to chronically ill employees that you can try out individually to see what works best.
So, what measures or accommodations can make sense - and how can we ensure that chronically ill employees feel comfortable?
Always be open to learn
Start by developing a culture that puts people first and genuinely cares about the wellbeing of all employees. Happy employees are also better employees. Anyone who constantly feels pressured to function perfectly at any time and any place in an environment where no mistakes are allowed, will soon feel unhappy, frustrated and overwhelmed. It is important not to see people as machines that have to function. Chronically ill or not - our productivity usually fluctuates, and that is ok.
Develop a culture of listening, free from prejudice and judgement. "But yesterday you could..." or "My friend's girlfriend also has... and she can..." should be sentences that belong to the past. Be aware that everyone experiences their illness differently. Even two people with the same diagnosis may experience very different symptoms and limitations. This is completely normal. Many diseases are spectrum based and not linear. Therefore, be open to the fact that different people need different accommodations, and that people do not function like machines. Also, these accommodations may need to be adjusted over time - people evolve and that's ok, and especially with dynamic disabilities it's important to be open to flexibility.
Workers have a right to privacy
Despite all openness it is important to know that those affected by chronic illness generally have no obligation to educate those around them. Private or intimate questions never need to be answered, and frankly shouldn't even be asked unless you have asked for consent first. After all, private matters must be allowed to remain private, and personal boundaries should not be crossed in the work environment. Of course, if someone speaks openly about their experiences on their terms, that's ok. But don't make someone feel as if they're being interrogated, whether they want to or not. How much they want to reveal is purely up to them.
Patients also have the right to choose whether they want to disclose their illness at all. You have no obligation to your employer to disclose your diagnoses. The decision lies with the person concerned. If you decide to disclose the illness, it is also sufficient to say: “I have a chronic illness, so I have more need for support from xyz. But I don't want to go into details." – and that is a perfectly fine answer to any questions.
Measures that can help chronically ill people in the workplace
Besides company culture, what are some concrete measures a workplace can take that can support chronically ill employees?
Flexible work hours
Our bodies don't work like perfectly timed machines. Especially when you have a chronic illness, your body is not always productive exactly when you want it to be. Flexible working hours are the be-all and end-all here. If we have the ability to work more on better days and less on worse days, the outcome will be much more successful than if we have to force ourselves to work on bad symptom days. Performance can also vary individually depending on the time of day. Some people have more energy in the morning and others in the evening. Flexible working hours allow us to listen to our bodies and be productive at those times where our bodies work best, not when the clock tells us to. Those who can take advantage of flexible working hours and who are trusted to manage their own time will need fewer sick days and will be happier and more productive than someone who is not trusted the same. Also, many chronically ill people have to go to the doctor or treatment appointments on a regular basis. Having flexibility can allow them to do all these things stress-free.
Home office without restrictions
Working from home is a real game changer for many chronically ill people. You can adapt to your individual needs while paying attention to your energy reserves.
For many, being able to work from home means no longer having to use energy to get to work, which is already a major barrier for many people with chronic conditions. For many people, home office means that it is even possible to work in the first place, and a great opportunity to participate in the work market where it might not be possible otherwise. It's important that we consider work from home to be just as valuable as the work that happens in the office, and to trust that employees can be productive without constant observation. Digitization offers a great opportunity here that many people can benefit from. And, studies show, that many people can work more productively if they have the option to work remotely - so it's really a win-win!
Adjustments in the workplace
For each person, these adjustments can mean something different. Some probably need special back-friendly office chairs, others need opportunities for retreat and rest, some may need the ability to work while lying down, or perhaps access to their own toilet (e.g. in the case of chronic inflammatory bowel diseases). Also, not having a specific dress code can help, because for many conditions, restrictive and uncomfortable clothing or shoes can increase pain levels – which is ultimately bad for concentration and productivity.
Also, people with chronic illnesses or pain should never be forced to work standing. They should be able to do as much work as possible while sitting down.
Enable part-time work
For many chronically ill people, full-time work is not realistic and not conducive to maintaining health. Compared to healthy people, you have less energy available, but you need much more time in everyday life for doctor's appointments, treatments, dealing with authorities, paperwork, symptom management and much more. This concept is called "usable hours" - these are the available hours in the day that you can actually do things besides resting or sleeping. In chronically ill people, these usable hours are severely limited due to our symptoms and the need for many extra rest breaks. In many cases, only part-time work is realistic. It can help here to emphasize when the position is advertised, that applications for part-time work are also welcome - if this is possible.
A model that can help significantly here is what is known as “job sharing”: this is a working time model based on part-time work. Two employees share a full-time position and divide all associated tasks among themselves. If one person is absent, the other is available, and vice versa. This can be a great opportunity to make employment accessible to chronically ill individuals where it may not otherwise be possible.
Specialized consulting and coaching
There are many organizations and programs that specialize in supporting people with disabilities and/or long term health-issues and guide them in their journey to be integrated back into the workforce. If you are a chronically ill person trying to get back into the workforce, try and get in touch with one of these organizations to see, if you are eligible for this kind of support. Many organizations offer this for free! Know, that you do not have to go through this process on your own and that getting help is ok and the smart thing to do!
There are also organizations that can advise and consult companies on how to best support chronically ill employees. If you are looking to make your company more accessible to people with chronic illnesses, there are organizations that can offer guidance.
These are some organizations and programs in Austria, that can offer support or consultation:
Wien Work: https://www.wienwork.at
Chancen Nutzen Büro: https://www.oegb.at/der-oegb/chancen-nutzen
My Ability: https://www.myability.org
UK: Astriid: https://www.astriid.org
If you know of any organizations in other countries, feel free to let me know!
Inclusion pays off
Due to stereotypes, chronically ill people are often labeled as lazy or unwilling. But being chronically ill has absolutely nothing to do with laziness or a lack of discipline – on the contrary! Many chronically ill people have to develop high organizational skills and creative thinking and problem solving strategies to make it through their everyday lives! So, assuming that chronically ill people would make worse employees is fundamentally wrong!
Accommodations are not an annoying extra, they help bring people to equal chances!
As a healthy person, it is hard to imagine how severely a chronic illness can limit you. It is all the more important to be prepared to provide help and accommodation wherever it is needed. This can help chronically ill people thrive in their jobs without fear of being left out of the labor market.
And: if we are willing to give people the support they need, we will see that chronically ill people are in no way inferior to their healthy colleagues in terms of competence.
Do you currently work? What are youre experiences with employment and chronic illness? Let me know and get in touch on my instagram: @rea.strawhill!