Chronic somatic impairment
Field report of an employee of the University of Cologne
I work at the Faculty of Human Sciences as a research assistant. I have had MS (Multiple Sclerosis) for 15 years. It does not usually show on me, because most of the symptoms are invisible. A typical example is fatigue: a particularly imperative form of tiredness.
It becomes difficult for me when there is a lot of overtime and I cannot get enough rest. What is "too much" for me is constantly changing. It is difficult for me to accept my own limits, because my job is great fun and often demands exactly what I am not good at: Showing commitment beyond the working hours. In general, I find the implicit performance standards in the scientific world relatively merciless; self-exploitation is apparently part of it. As a chronically ill person, I cannot participate in this.
It helps me a lot when colleagues and superiors show understanding when I cannot and do not always want to comply with the work ethic expected from scientists. It also helps me when I can (in moderation) arrange working hours and location flexibly.
I can now use my own resources in a very targeted way. In addition, I am relatively stubborn when others tell me that something in my situation does not make sense. Often it works out anyway and I am then proud of myself.
I have learned through MS to focus and not to get too involved in sideshows, even if they seem tempting. And I would like to pass on the understanding I have gained to others: I now know that things can happen to everyone in life that limit their options and that it can still be very important for these people to fulfil their career aspirations.
I treat myself and my powers with care. This also means that I work less in comparison to other research assistants* in my position. I can hardly imagine to find a place in science in the long run, I won't be able to keep it up. I have consciously decided to take a drug that will allow me to live a relatively carefree life as far as MS is concerned. Without this, I would probably not be able to do a doctorate. For this I accept the risk of serious side effects.
I like working at the University of Cologne because I find the job of a scientist super great. I can help us to learn more about the world we live in. I find this extremely meaningful and satisfying. I also enjoy working in our work team because people here accept me for who I am (with my MS, but also the other strengths and weaknesses) and give me the freedom I need.
In numbers...
Students for whom chronic somatic illnesses have the greatest impact on their studies represent a high proportion of all students with disabilities, accounting for 20% of all students with disabilities in the best2 survey in Germany (n = 20,897). They most frequently cite gastrointestinal diseases (36%), chronic pain (21%), metabolic disorders (13%) and allergies (11%). Chronic pain has the greatest impact on the everyday life of the study. The special evaluation of the University of Cologne on the best2 study speaks of 16.4% of the respondents (n = 952 only UzK) for whom a chronic somatic illness has the greatest impact on their studies (NRW = 20.2% with n=5,436).