Fibromyalgie: de voorwaarde die niemand begrijpt

Ik heb al zes jaar last van fibromyalgie. Tot op de dag van vandaag weet ik niet zeker wat ik het moeilijkste vind; de constante pijn, vermoeidheid en ontelbare andere symptomen die samenhangen met de diagnose, of de voortdurende noodzaak om het uit te leggen en te verantwoorden.

In 2010, toen ik werd gediagnosticeerd, was het door een proces van eliminatie. Ik had verschillende tests en scans zonder conclusie gehad en op een dag vroeg ik aan mijn huisarts of ik misschien fibromyalgie heb, nadat ik er online over gelezen heb.

Ik weet zeker dat zelfdiagnose op het internet het enige is dat alle huisartsen adviseren om te doen, maar hier gebeurde het. Ik werd doorverwezen naar een reumatoloog die mijn diagnose bevestigde na het voltooien van de tendertest en even voelde ik opluchting.

Beeldresultaat

Maar die afspraak werd een van de vele frustrerende gesprekken met medici die mijn pijn niet geloofden of niet begrepen. Die reumatoloog, die geen klinische psychologieopleiding op zijn naam kreeg, vroeg me de meest clichématige vraag van allemaal.

“Dus,” zei hij, “vertel me over je jeugd. Ben je met je ouders verder gegaan? ‘

Maar toch, vijf jaar later, ben ik woedend op mezelf omdat ik hem niet uitdaag. Ik had hem moeten vragen waarom hij Pop Psychology 101 naar me gooide, maar in plaats daarvan vertelde ik hem over mijn jeugd.

Hij stelde voor dat ik een reeks sessies met een psycholoog zou ondergaan en ik vroeg niet waarom, ik knikte en huilde gewoon. Ik vroeg naar de behandeling van de pijn en hoe ermee om te gaan, maar hij zei dat praten met de psycholoog daar iets mee moet doen.

Die ervaring was de eerste keer dat ik zo’n sterk gebrek aan begrip voelde, en elke keer is het zo hartverscheurend als het vorige.

Maar het zijn niet alleen medische professionals. Toen mijn vriend een paar jaar later werd gediagnosticeerd met multiple sclerose, voelde ik me jaloers. Kun je het geloven?

Ik heb het haar nooit verteld – of het aan iemand toegegeven, maar als ik zag dat ze tijdens de eerste paar weken van haar diagnose kaarten en bloemen van al onze vrienden ontving, realiseerde ik me hoe weinig van mijn vrienden fibromyalgie echt begrepen.

Ze had afspraken met tal van artsen en verpleegkundigen, allemaal daar als onderdeel van haar ‘ondersteuningsnetwerk’. Ik had van niemand gehoord na die afspraak met de reumatoloog – tenzij je de psycholoog meetelt die me na drie sessies ontsloeg omdat hij ‘geen tekenen van trauma’ kon zien.

Ik had zo’n netwerk niet van vrienden, familie of medici. Eigenlijk had ik op dat moment moeite om mijn eigen huisarts te krijgen om de pijn te begrijpen die ik had.

Als je lijdt aan fibromyalgie, ben ik er zeker van dat je pad naar diagnose zo vreselijk en gecompliceerd was als de mijne. Ik heb nog nooit gehoord van een lijder die van begin tot eind met begrip, geloof en vriendelijkheid is opgevangen.

Ik vind het echt verbijsterend dat zoveel mensen zo onwel kunnen zijn en toch is het gebrek aan steun en gebrek aan bereidheid om te begrijpen slechts een gegeven.

Mijn bedrijfsadviseur op het werk vertelde me: “Fibromyalgie is in de mode van de jaren negentig – in de jaren negentig beweerde iedereen dat ik ME had”, en mijn consultant bij de pijnkliniek zei: “Veel fibromyalgiepatiënten komen hier huilen en in hun pyjama zitten – je lijkt het goed te doen. ”

Ik zal nooit begrijpen waarom opmerkingen als deze aanvaardbaar zijn, vooral van professionals in de gezondheidssector.

Toch is het niet allemaal slecht. Naarmate de jaren verstreken, heb ik veel geluk gehad. Mijn ondersteuningsnetwerk bestond mogelijk niet aan het begin, maar is gegroeid omdat ik meer openhartig ben geworden over mijn toestand. Ik praat er over op het werk, ik blog erover in mijn vrije tijd en ik maak verbindingen via sociale media met andere fibromyalgiepatiënten.

Mijn vriend is een grote steun en heeft nooit de geldigheid van mijn pijn in twijfel getrokken; zijn vader heeft meer dan 30 jaar bij ME gewoond, dus begrijpt hij maar al te goed de moeilijkheden die gepaard gaan met chronische pijn en onzichtbare ziekten.

Maar helaas heb ik veel discussies gelezen over fibromyalgie-fora waar patiënten praten over hun gebrek aan familiehulp of het gebrek aan begrip in hun sociale omgeving. Daarom zijn blogs en sociale netwerken zo belangrijk. Ze herinneren ons eraan dat we niet alleen zijn.

Er zijn meer dan 5 miljoen fibromyalgielijders in de VS en miljoenen meer over de hele wereld en ik denk graag dat naarmate onze stemmen sterker worden en we luider worden, we het bewustzijn zullen verhogen, onderzoek en onderwijs zullen aanmoedigen en het begrip van fibromyalgie zal groeien.

Naarmate het onderzoek vordert, zullen klinische proeven plaatsvinden en wie weet zal er ooit een geneesmiddel komen. Maar in mijn leven zou ik graag zien dat onze diagnose iets betekent.

Ik wil dat mensen met begrip en sympathie reageren als iemand tegen hen zegt: “Ik heb fibromyalgie.”

128 thoughts on “Fibromyalgie: de voorwaarde die niemand begrijpt

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