Hij is altijd moe en het doet de hele tijd pijn. Patrick Schutz van Neuchâtel lijdt aan fibromyalgie, een onzichtbare ziekte die niet wordt erkend door een arbeidsongeschiktheidsverzekering.
Pijn, pijn, niets dan pijn: Patrick Schuts (41) uit Neuchâtel voelt altijd dat hij griep heeft, zonder koorts, maar met grote vermoeidheid van lood. Hij zou de hele dag in bed willen blijven en daar tijd doorbrengen. “Elk deel van mijn lichaam doet pijn, gelukkig niet alles tegelijk”, vertelde hij het tijdschrift “L’illustré”.
Patrick Schutz en zijn partner hebben een drie jaar oude dochter, Naya.
Zelfs als je er maar 20 minuten mee speelt, wordt de energie de hele dag door geëlimineerd. “Toen ik in slaap viel, werd ik wakker, ik ben zo moe als ik nog nooit heb geslapen.” Hij verloor veel vrienden die denken dat hij doet alsof. ‘S Nachts kunnen we niet meer uitgaan zoals eerder, om 19:00 uur naar bed gaan om te ontspannen.
De diagnose van zijn lijden een jaar geleden onthulde: fibromyalgie. Naar schatting zijn 400.000 mensen getroffen in Zwitserland. Het probleem:
Fibromyalgie wordt niet erkend door een arbeidsongeschiktheidsverzekering (IV). Er is geen wetenschappelijk bewijs: er is geen bewijs gevonden in het bloed en röntgenfoto’s. Honderden symptomen kenmerken fibromyalgie. Het wordt bepaald door de uitsluiting van andere ziekten en door een test: gewoonlijk worden zachte vlekken gebruikt.
Als elf of meer van de 18 (zachte plekken) meer pijn hebben, is er een vermoeden van fibromyalgie. Deze diagnostische punten liggen dicht bij de peesmotor benadering. De oorzaak van de ziekte is niet duidelijk en kan alleen worden beperkt door medische maatregelen.
De bescherming van Patrick moet veel medicijnen bevatten: analgetica, antidepressiva, vitamines, geneesmiddelen om de maag te beschermen en gevoelige en droge oogdruppels. “Het is een onzichtbare pijn”, zegt Schutz. Hij wil zoveel mogelijk mensen om hem te kennen, hij heeft een Facebook-site voor fibromyalgie gemaakt om het bewustzijn van de bevolking te bereiken.
Patrick is al twee jaar werkloos en leeft van de bijstand. Als de IV het lijden ten minste gedeeltelijk zou erkennen, zou het al geholpen zijn. Verwacht financiële steun vanwege je depressie en chronische vermoeidheid. Zijn grootste hoop is een populair initiatief dat net is gelanceerd en dat de erkenning van fibromyalgie als een ziekte vereist.
Hij speelt met zijn dochter Naya, maar na 20 minuten raakt zijn energie op.
Patrick ligt op een tapijt om pijn te verlichten.
Patrick’s relatie met Sylvie’s partner is ook moeilijk geworden. Er zijn geen gewone televisiesongs omdat hij vroeg slaapt. Naya is verrast dat papa op hetzelfde moment naar bed gaat. Patrick Schutz weet niet hoe lang zijn toestand kan duren: “Ik ben pas 41 jaar oud en ik woon in het lichaam van een oude man!”
Patrick vermoedt dat zelfs traumatische ervaringen in het verleden kunnen worden geactiveerd. Op 17-jarige leeftijd was hij aanwezig toen zijn vader een man met een steen voor zijn ogen sloeg.
Patrick heeft geen contact met hem. De geboorte van zijn dochter was ook slecht: bijna de moeder en het kind waren dood. Patrick: “Deze gebeurtenissen hebben me diep geschokt.”
Hij zou graag iets met zijn vrouw en dochter willen doen, maar zijn lijden en het kleine geld dat hij ontvangt, maken deze wens niet echt.
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