Somewhere in the middle of the grid

By Laura TomassiniMartine PinnelLex Kleren Switch to German for original article

Job hunting, everyday work, tenancy agreement: All these things are part of daily life — but some people find it difficult to cope with them. Alex Feltgen is one of them, because the trained graphic designer has a rare disease that not only affects her health.

She is a trained graphic designer and more than qualified: Alex Feltgen completed a "technicien commerce" class in high school, holds a higher technical diploma (BTS) in marketing and international business and a bachelor's degree in graphic design — a so-called "bac+2" and a "bac+3". But the 34-year-old also has the status of a disabled worker, because since her youth Alex has had Gélineau's disease, known as narcolepsy-cataplexy syndrome.

"I have type 1 narcolepsy, in combination with cataplexy, which is a sudden muscle failure triggered by strong emotions", explains the graphic designer. She feels emotions much stronger than those around her and especially positive moments — a joke, a laugh, a good meal in a restaurant — can cause Alex's knees to buckle, without any warning. Due to her combi-illness, which falls under the category of rare diseases, she mainly suffers from sleep disorders and paralysis, insomnias, hallucinations, as well as other physical and mental symptoms that make her everyday life hard work.

Prejudices at work

"During the day I am extremely tired and sometimes can hardly stay awake, my nights, on the other hand, are not restful at all, as I fall asleep quickly but am wide awake again after three to five hours. My sleep quality suffers enormously", Alex explains. She was only diagnosed with narcolepsy when she was 25 or 26 — after her studies and years of comments about her supposed laziness. While the knowledge eased some of her worries, it brought other, more future-oriented ones. Above all, dealing with her illness is a real obstacle regarding the job market, because her symptoms are undeniable in the professional environment.

"As a graphic designer, you work a lot under pressure and on deadlines, which is very difficult for me because of my fatigue. I also can't drive for hours and hours like other people can, for the same reason." Currently, Alex works in a small printing company, this under her disabled employee status. Her work impairment is the absolute minimum of the status, i.e., 30 per cent, so Alex, in her case, "only" has to work 20 hours a week and the national employment agency (ADEM) pays her employer a state-run salary subsidy.

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