(Samen) Online Ziek; Een exploratief onderzoek naar de manier waarop het geconfronteerd worden met reumatische aandoeningen betekenis krijgt, gerelateerd aan sociale-media-ervaringen
Dr. Google voorbij: samen ziek zijn online, een helend proces
Het internet wordt vaak gezien als de plaats bij uitstek waar mensen zich overgeven aan hypochondrie. Dr. Google heeft de reputatie mensen vooral paranoïde te maken. Ook worden mensen er zelf al te vaak van verdacht, wanneer ze ziek zijn, de ernst van hun symptomen te overdrijven of overschatten, waardoor ze al snel tot desastreuze prognoses komen. Ook in wetenschappelijke kringen wordt gebruik van het internet om een diagnose en oplossingen voor gezondheidsproblemen te zoeken, veelal als een gevaarlijke praktijk beschouwd. Het internet, en het sociale contact met lotgenoten dat het mogelijk maakt, kan echter ook steun bieden in moeilijke tijden, zo blijkt uit een masterproefonderzoek van Tom Van Ransbeeck aan de UGent. Hij bestudeerde in het kader van zijn opleiding Gezondheidsvoorlichting en –bevordering een Facebookgroep rond reumaklachten en kwam tot enkele opvallende conclusies.
Tegenwoordig krijgen steeds meer mensen te kampen met chronische ziekten. Van Ransbeeck beschrijft hoe deze mensen hun toevlucht zoeken tot sociale media, en waarom precies. Hij beschrijft hoe target-oriented care, de benaming voor hoe zieke mensen en medisch personeel samen kijken wat nog haalbaar is met de ziekte en hoe zij dit nog kunnen verwezenlijken, langzaamaan het nieuwe credo wordt in de gezondheidszorg. Vroeger was immers eerder sprake van problem-oriented care: proberen wegwerken van het fysiek-medische probleem, en als dat niet kon, tja, dat was het dan voor de zieke persoon. Natuurlijk leerde deze laatste op die manier niet hoe hij of zij het beste zijn/haar leven aan de ziekte kon aanpassen, waardoor zijn/haar levenskwaliteit er niet op vooruitging.
Ook beschrijft Van Ransbeeck de invloed van het Web 2.0, dat gebruikers niet alleen toelaat om makkelijk informatie te verzamelen, maar ook om informatie uit te wisselen met andere gebruikers, bijvoorbeeld door middel van sociale netwerksites zoals Facebook. Van Ransbeeck volgde gedurende 6 maanden het reilen en zeilen in een Facebookgroep rond reumaklachten. Hij las en postte berichten en ging in dialoog met gebruikers via de groepsfeed, privéberichten en face-to-face interviews. Hij beschrijft gedetailleerd hoe het groepsgebeuren meer wordt dan zomaar klagen of informatie vergaren. Zo ontstaat in de bijna 3000 leden sterke groep een groepscultuur, waar mensen een gevoel van thuiskomen ervaren, waar zij hun verhaal kwijt kunnen, bij elkaar steun vinden en van elkaar leren. Het gevoel van samen ziek te zijn stelt hen in staat de ziekte een plaats te geven in een veilige omgeving en zichzelf terug te vinden, nadat zij zich verloren voelden door de confrontatie met ziekte.
Het onderzoek beschrijft de dagelijkse strijd van het leven met chronische ziekte in de woorden van zij die het beleven. Het toont aan dat leven met een chronische ziekte meer is dan omgaan met fysieke belemmeringen en symptomen: het is ook een zoektocht om het leven opnieuw betekenisvol in te vullen en zichzelf terug te vinden. Mensen leven niet alléén: chronisch zieke mensen voelen zich gewrongen in een netelige positie. Ze mogen immers niet “te gezond” lijken op goede dagen, maar “mogen zich ook niet laten gaan” en doen zich sterk voor op slechte. Zo proberen ze aan de verwachtingen van hun omgeving te voldoen. Een beschuldigende vinger hangt immers voortdurend als een zwaard van Damocles in de lucht en zorgt ervoor dat mensen zich alleen voelen, in een rol van zieke gedramd. Ze mogen niet genieten van een goede dag of uitblazen op een slechte. De zieke persoon voelt zich zo verantwoordelijk voor de reacties van anderen op een moment dat hij/zij zelf ook nog volop zoekt hoe hij/zij het leven met een ziekte, waarover hij/zij niet altijd controle heeft, kan invullen.
De social affordances van Facebook, de wetenschappelijke benaming voor hoe Facebook interactie vergemakkelijkt door de mogelijkheden die het biedt, maken het eenvoudiger om tot de groep toe te treden en te posten: “ne keer een likeske geven” kan met één klik. Zelfs deze kleine vorm van appreciatie en erkenning zorgt er al voor dat de leden de groep blijven gebruiken. De laagdrempeligheid van interactie legt, samen met de herkenning van de moeilijkheden van andere leden als eigen moeilijkheden, de fundering voor een sterk groepsgevoel. De online groep wordt meer dan enkel een plaats voor informatie, meer dan een dokter Google. Ze wordt een plaats waar men zich begrepen voelt, waar men in een veilige omgeving de goede dagen kan vieren, zonder scheef te worden bekeken als “valse zieke”, en kan klagen op slechte dagen, zonder te worden gezien als iemand die zich laat gaan.
In de Facebookgroep komen mensen in contact met elkaars verhaal en vinden hierin uitdagingen terug waarvoor zijzelf ook staan. Ieder tracht op zijn/haar manier om te gaan met symptomen en bijwerkingen van medicatie, het onzeker verloop van de ziekte, de reacties van de omgeving en de manier waarop de ziekte een invloed heeft op hun werksituatie. Samen begrijpen zij gevoelens en moeilijkheden die voor een buitenstaander minder duidelijk zijn. Dit vormt de basis voor een sterk wij-gevoel en de ontwikkeling van een eigen cultuur, die onder andere zichtbaar is in hoe mensen via memes op een humoristische wijze de uitdagingen van hun ziekte uitbeelden. Zo wordt een beeld uit de Star Wars-trilogie waarin Darth Sidious zich ontfermt over een zwaargewonde Anakin Skywalker, een humoristische aanklacht tegen de manier waarop chronisch zieken het gevoel hebben dat zij in de maatschappij moeten meedraaien om nog waardevol te zijn als mens.
Dit laat hen toe om te gaan met gevoelens van onzekerheid en frustratie met betrekking tot hun ‘zieke zelf’. Samen ziek zijn wordt zo ook samen lachen, samen relativeren en samen terug leren leven in plaats van door ziekte geleefd te worden. De thesis vormt een belangrijk startpunt voor een toenemende waardering voor de mogelijkheden die het internet biedt voor het welzijn van mensen die te kampen krijgen met chronische ziekte te vergroten. Wordt ongetwijfeld vervolgd...
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