When we launched the „Illness in Organisations“ salon series in October 2024, the three of us had already been meeting regularly once a month for a year with our colleague and friend Monia to share personal experiences and insights about what it means to work and want to be effective with a chronic illness. In the course of these discussions, it became increasingly clear how big and important the topic is and, at the same time, how underrepresented and undiscussed it is in the world of organisations: According to a Study by the National Association of Statutory Health Insurance Physicians in Germany are 41% of men and 48% of women aged between 35 and 59 are affected by at least one long-term illness., who requires regular medical treatment.

The theoretical starting point was also that chronic illnesses can be accompanied by numerous limitations and stresses that significantly affect the lives of those affected. In addition to permanent or intermittent pain that makes everyday life difficult, a lot of time is often lost to therapies, medical treatments, visits to doctors or hospital stays. It is particularly noteworthy that many symptoms of chronic illnesses are invisible. They remain hidden from outsiders, even though they can significantly limit performance in everyday life and especially at work. This invisibility often leads to shame, insecurity and fear of negative reactions from the social environment, such as colleagues or superiors. These fears can cause additional psychological stress. In fact, the risk of developing depression or anxiety disorders is significantly higher in people with chronic physical illnesses: around 40% of them are affected – a significantly higher proportion than in healthy people. The psychological stress often manifests itself in everyday situations. For example, frequent absences from work can lead to feelings of guilt towards colleagues, especially if they are not informed about the reasons behind them. Many of those affected are concerned about the possible consequences of disclosing their illness. They fear a career setback or even the loss of their job. Looking for work after a long period of incapacity due to chronic illness is extremely difficult, as gaps in one's CV must be explained and the employer must be convinced of one's ability to work. At the same time, the illness raises questions about how it affects relationships with colleagues, superiors and other people in one's personal environment.

So how can it be that we so rarely talk about and know about (chronic) illnesses at work?

Our basic assumption was therefore that managers in particular, but ultimately all of us, cannot avoid having to become capable of acting and speaking out and must therefore address what it means in the world of work – far beyond the formats and approaches of occupational health management – to be affected by a chronic illness and how the ability to work can be enabled.

The idea behind the new SOCIUS salon format was to offer an open forum for discussion on the topic of “healthy patients” in order to approach the topic together with the participants, exchange experiences and think about possible solutions together.  The response to these three two-hour events, entitled „Discussability“, „Visibility“ and „Consideration“, far exceeded our expectations and was deeply moving. Rarely have I felt that such a central social issue is so taboo and that there is so little self-evidence, curiosity and willingness to take responsibility for enabling open communication and finding appropriate solutions together!

In very personal discussions, we gathered the following experiences and insights:

Discussability: Talking about illnesses – but how?

One participant summed it up: „I talk about it so much, but the next day it's as if it's gone. How can we find forms of communication that are sustainable, where we don't always have to start from scratch explaining what we need?“ It became clear here that it takes not only courage to talk about illnesses, but also structures that facilitate such conversations and are repeated at regular intervals.

Shame plays a central role in this. Many participants reported that they feel vulnerable and insecure when talking about their illness. One participant explained: „I don't want to feel responsible for how others feel when I talk about illness.“ In order to remove the taboo surrounding such conversations, both co-regulation in groups and greater social openness are needed. At the same time, other participants also spoke about the uncertainty and helplessness of non-sick people when it comes to starting an open conversation. An important aspect here was dealing with shame: „The only way out of shame is to show vulnerability – but that also requires a vulnerable counterpart.“

The discussion highlighted that there is often a lack of tools for talking about illness. More inclusive language and formats such as deep listening spaces can help to facilitate communication on an equal footing. Such spaces create the opportunity to talk about one's own challenges without interruption or judgement – an approach that could be established in organisations.

Visibility: Making illnesses visible and recognising them

It is precisely this invisibility of chronic illnesses that poses major challenges for those affected. „If the illness is not visible, it is quickly forgotten,“ said one participant, describing her experiences. Symbols and clear signals are needed to anchor awareness of chronic illnesses in teams and organisations.

But visibility also carries risks: making yourself visible without getting a response can be particularly hurtful. „People need symbols to remind them that someone is ill. But if nothing happens, it's the worst thing,“ said one participant. The type of illness also plays a role: „You get more sympathy with a brain tumour than with depression. That also silences the room.“ Based on the diversity-Work was formulated as a request to non-sick people: „When you talk to me, forget that I am a sick [black] person. And never forget that I am a sick [black] woman!“ This therefore requires a willingness to engage in deeper discussion and personal learning processes.

At the same time, many of those affected among the participants reported multiple experiences of discrimination in the workplace by superiors, which also justifies caution in self-disclosure.

Open visibility can not only relieve those affected, but also enrich organisations. One participant reported that her organisation had thanked her for the knowledge her illness had brought to the team. This attitude makes it possible to see chronic illnesses not only as a burden, but also as a source of reflection and transformation.

Consideration: Between empathy and change

Consideration is a multifaceted concept. For many, it means striking a balance between individual care and the pursuit of change in organisations. „Reliability is key. Promises that are not kept are a real disaster,“ was emphasised. This places a great responsibility on managers and teams to create a culture of commitment.

When dealing with chronic illnesses, a change of perspective is essential: instead of focusing on a cure, the aim is to live well with the illness and integrate it into everyday life. Well-meaning advice such as „Why don't you try...“ is not helpful, as it fails to recognise the reality of chronic illness. It is more important to listen to those affected, to recognise their individual coping strategies and competence in dealing with their illness, and to enable them to take on tasks that are tailored to their needs. „When I am given tasks that are not tailored to what I can do, my life doesn't just become a little more stressful, it's more like being kicked out or completely excluded!“ was one statement.

However, consideration must not degenerate into paternalism. Those affected reported that they often feel under pressure because of the huge „social debt mountain“ that is piling up. One participant called for clear structures to be created: „I need the power to decide for myself what I do and what I don't do. On the other hand, it is often much easier to take responsibility for others than to stand up for yourself.“

It is also important for teams to make a clear distinction between acute and chronic illnesses. An example from a small team with two chronically ill members and one healthy member clearly showed how stressful unclear roles and expectations can be, and how, despite openness in dealing with each other, an imbalance can easily creep in between what is expected to be achieved and what can actually be achieved. „It takes a lot of gentleness and flexibility in dealing with each other,“ was one conclusion.

Transformation of the world of work

The events showed that chronic illnesses pose a variety of challenges in the workplace for which we currently have few resources, tools or appropriate language. Given developments in society and the labour market, we cannot afford to remain in a state of awkwardness and ignorance. The aim is to create a culture of exchange in organisations where people can talk about their illness without feeling ashamed or having to justify themselves. Visibility and consideration should not be exceptions, but rather natural elements of inclusive working environments. At the same time, there needs to be a social debate on an equal footing about what true inclusion means.

However, dealing appropriately with chronic illnesses in organisations not only presents challenges, but also offers great potential. Chronically ill people are often pioneers of transformation when we see them as seismographs for what is going wrong and leading to stress and overload in entire teams. „Constant meetings are impossible for me – but they are also often very exhausting for other colleagues. Ultimately, it is an excess of convenience to gather information yourself.“ „We need chronically ill people to change the world of work,“ was the conclusion of the discussion. With creative solutions such as flexible working hours, buddy systems and reflection rooms, organisations can create an environment in which everyone – whether healthy or ill – can work productively within their capabilities and be satisfied.

At the end of the three events, we felt that we had only scratched the surface. „We need a movement!“ was one of our conclusions. For this reason, and because we heard several times that „this is the first time I've been able to exchange ideas so openly,“ we will continue in 2025. We have planned six more SOCIUS salons from January to June.