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Case Study
REHADAT-Knowledge Rheumatism - Interview "Know-how in demand"

The interview with Andreas Brodbeck was conducted by Jasmin Saidie for REHADAT-Knowledge issue Rheumatism

About the person:

Mr. Brodbeck works in the engineering office Schlaich Bergermann Partner (SBP) in Stuttgart. He was diagnosed with Bekhterev's disease in his youth. He has been active in self-help for over 20 years and is currently a board member of the German Bekhterev's Disease Association (DVMB). (DVMB). There he informs and advises other patients, among other things on how to deal with the illness in working life.

REHADAT:

How did you first become aware of Bekhterev's disease?

Mr. Brodbeck:

At the age of twelve, I had my first symptoms in the form of severe, non-specific pain. Many things that I had enjoyed doing up until then were suddenly no longer possible, for example cycling. The diagnosis was made a short time later, I walked for a long time with crutches and was regularly in inpatient treatment. During this time I learned a lot about my body and the illness. When I couldn't go to school for half a year, I received a lot of support from teachers and classmates. Then in self-help I learned from other sufferers that the pain is actually nothing bad and there is a solution or therapy for many of my problems.

REHADAT:

What influence did your illness have on your career choice?

Mr. Brodbeck:

When it came to choosing a career, my illness played a decisive role. Originally I wanted to build tunnels underground, which was not a good idea with Bekhterev's disease. So when I was 16, I did vocational training to become a technical draftsman because I could do the job in a wheelchair. At that time I used the wheelchair regularly, in the meantime only phasewise. The office job in the technical field was the right decision for me - today I work as a planner in bridge construction.

REHADAT:

What were your first experiences at work?

Mr. Brodbeck:

In my first job after the vocational training I was well integrated, but I often reached my physical limits. At that point I realized that it was better to be open about my illnesses. It wasn't that easy, now I had to stand up for it on my own and didn't have my parents behind me, as I did when I was at school. Now I had to say "I have a disability and we have to see how we can reconcile that with work." That's when I learned that professional life is not only about expertise, but also about humanity and respectful interaction. This experience runs through my entire professional life so far.

REHADAT:

How openly do you deal with your illness at work?

Mr. Brodbeck:

That already starts with the application. I always state my degree of disability and also the diagnosis. If I am rejected because of my illnesses, it is hard at first, but then the company would probably not be suitable for me either. Accurate descriptions are very helpful to superiors and colleagues. It has helped me to know what I have myself and to be able to depict this well. Explanations that sound dramatic and diagnoses alone are often rather off-putting or not entirely comprehensible. I usually explain that I have a spinal issue and what exactly it means to have pain and inflammation. I have always focused on being open about my illness, and that has tried and tested for me to this day. But of course, I can't take everything out of myself. When I'm well, I have to be just as open about it. I can't just name my less good phases and thereby always put myself in a special role. Also a "I'm fine right now, let's get something done" happens naturally and I think that's important too.

REHADAT:

How does the work environment react to your openness?

Mr. Brodbeck:

A former personnel manager once explained to me why he had chosen me at that time: "Because you knew what it was all about and what was happening to you. You enlightened us and always kept us in the picture. We knew about the X factor with you, which we couldn't completely assess. But we also knew you could handle it." This encouraged me to be transparent about possible uncertainties and to continue to be open about ankylosing spondylitis. Then everyone involved knows what they are dealing with. I have also had the experience that colleagues approach me specifically when they cannot understand something. There have also been conflicts with colleagues who didn't understand why I take certain liberties and, for example, work more often in my home office than others in the team. Then I explain that and it's usually okay with everyone.

REHADAT:

How does Bekhterev's disease affect your everyday work?

Mr. Brodbeck:

In the past, there have been absences due to the pain. I am sometimes unable to concentrate because I sleep very little at night. Therefore, there are days when I need longer for individual activities. In a previous job, driving a car was also a problem. My former boss then provided me with vehicles with heated seats from the company pool, which is good for my back in winter. For me, office work is best. Nowadays, a lot of things are possible - for example, I once managed a construction site from a hotel room using a laptop and mobile phone. A fixed salary is important to me, as this reduces the pressure to perform compared to hourly pay. Pain and discomfort also have a lot to do with the psyche. That's why it's important to keep stress and psychological pressure to a minimum. Rigid working and attendance times are rather unfavourable, because one's own performance does not always fit these times. In good phases I also go beyond my limits and have done night shifts in the past. But there were also phases when I wasn't feeling well, but I still went to work. Today I know my limits better and know what doesn't do me good and what I can do. Of course, sometimes on a construction site I would like to carry the iron bar from A to B, but there I have to admit to myself that I can't do that. In my last job for a large construction company I also travelled a lot. However, it was clear from the beginning that I determine what I can do with my illnesses. We therefore postponed business trips when I wasn't feeling well. However, at some point the travelling became too much for me, so I changed jobs. In the meantime I no longer take basic medication, which makes things easier at work. My impairments due to muscular problems of relieving posture are often stronger than the actual ossification due to Bekhterev's disease. There are days when my walking apparatus goes crazy. The first few metres are a bit wooden and I have to run in first. That is part of me, my colleagues know it and are not surprised.

REHADAT:

What supports you particularly in your work?

Mr. Brodbeck:

A lot of flexibility is most important for me, so I can adapt my work performance to my resources. With a working time account, I can freely divide up my working and break times, which takes the pressure off and also reduces absenteeism. For example, I can go to physiotherapy, doctor's appointments or even go swimming while I'm at work. If I work overtime, I get time off in lieu. Working from home is also helpful. I have been working from home since the Corona pandemic began. The risk of infection is no higher than for a healthy person, but this could result in a new bout of the illness and its consequences could be long-term. Fortunately, the majority of my work is not tied to specific times of the day or night. In previous jobs there was sometimes a production behind it, so I sometimes had to be there at seven in the morning. Such external factors can create stress in the long run. Being able to shape working conditions as much as possible by means of home office and flexible working hours, for example, is a great advantage for people with illnesses such as Bekhterev's disease.

REHADAT:

What other factors do you experience as supportive in your job?

Mr. Brodbeck:

Supportive superiors are basically helpful. Feedback from superiors about my work also gives me the good feeling that my illness is not interpreted in a negative way. I also have a height-adjustable desk so that I can switch between standing and sitting, and a lumbar support chair. My employment contract also states that I get a parking space near the entrance if I need it. As a "back-up" I have a wheelchair to get to work. All of my workplaces have been accessible so far. When I have to travel on business, it always means a bit more organisation and time, as I usually arrive the day before for a one-day meeting and return the day after. In longer meetings, I like to "flop" around in my chair because it's good for me. But then I also explain that so colleagues don't see it as rude or disinterested.

REHADAT:

What job challenges do you see for other affected people?

Mr. Brodbeck:

Many affected people, especially younger ones or those recently diagnosed, get stuck because it takes time to deal with the situation. Then they often withdraw and have difficulties describing their illness in a way that outsiders can understand without hiding behind technical terms. When choosing a career and starting a job, the question "Do I tell or not?" often arises. It's an individual decision and not everyone has the courage to bring up the illness. I also had phases where everything was too much for me - it should be possible to talk about it, but many sufferers find it difficult. It is helpful if colleagues and superiors know about it and if those affected find a supportive environment. Through the self-help association, I pass on my knowledge and experience to other sufferers. Employers usually perceive the voluntary association activity positively: It shows that one stands up for a cause and can organize.

REHADAT:

Do you have any tips for affected persons and companies?

Mr. Brodbeck:

Illnesses that are not directly visible tend to require explanations. I recommend that those affected deal openly with the illness and explain the context to superiors and colleagues. People with Bekhterev's disease should not be put off and should choose a job that suits their abilities and that they enjoy. It is important to keep an eye on one's own performance, to listen to signals from the body and, if necessary, to accept that something is not working. Often it is the little things that make it possible for people with a deficit to become part of a team. So maybe as a team event you shouldn't go ice skating but you should go archery. In my company, interestingly enough, inclusion is not such an explicit topic. From my point of view, it's not even necessary. Because for us it's all about the people and what they can do. If certain work equipment such as tables or chairs are needed, they are provided. It's not about paragraphs, but about pragmatic solutions. I would like to see this approach in many other companies as well. For this, a basis of trust is important and the idea of creating things together as a team. By being open and approaching each other, employers can get motivated and committed employees. In my view, there should never be taboos, they would always create tension and never give the other person the chance to bring about an adaptations. This already starts with the application.

Further Information

No information about funding available.

ICF Items

Reference Number:

Pb/111133


Last Update: 29 Mar 2023