När du är i konstant smärta och ingen tror dig

Jennifer Brea var 28 år gammal när hon inte lyckades avsluta en promenad eller cykla, hon gick hem halvvägs och sov i timmar.

“På ett sätt tänkte jag:” Åh, kanske blir jag bara gammal, “säger regissören och huvudpersonen i den nya dokumentären” El Malavos “. “Jag var bara 28 år gammal och jag tänkte:” Kanske blir jag bara gammal? “Och en del beror på att jag fortsatte att gå till doktorn och han sa till mig:” Du mår bra, du mår bra, du mår bra “”.

Hon var inte bra, hennes trötthet blev värre och snart fick hon sin doktorsexamen från Harvard, Ph.D. Student kunde inte fylla i meningar eller ens skicka ett mail. Men doktorerna kunde fortfarande inte identifiera något som förmodligen var fel med henne, och hon fick slutligen höra att hon hade en “omvandlingsstörning”: en modern version av hysteri.

Faktum är att Brea, som nu är 35 år och bor i Kalifornien, har kronisk trötthetssyndrom eller CFS, även känd som myalgisk encefalomyelit. Biverkningen orsakar allvarlig utmattning, hjärndimm och ofta smärta. Han misstänker att hans fall utlöstes av en feber på en dag 2011, även om det är litet känt om orsakerna till kronisk trötthet.

Hans dokumentär, som nu visas på IFC-centret, kränker hans kamp med CFS, och stigmatiken är knuten till den lilla kända sjukdomen: för att tillståndet fortfarande ligger under radarn tror många att de med CFS helt enkelt är trötta Eller överdriva. symptomen

Brea korståget blir populär, tack delvis till en handfull kändisar som har öppnat sina egna kamp mot kronisk och svår att diagnostisera sjukdomar.

Sångare Lady Gaga gjorde nyheter tidigare denna månad när hon meddelade att hon led av fibromyalgi, ett annat kroniskt smärtstillstånd. Hon avbröt ett skede av en turné för att återhämta sig, men även hon stod inför reaktionen av fans som inte trodde hennes sjukdom var riktig.

Med båda tillstånden finns det inget blodprov för att bekräfta en diagnos; Snarare görs diagnoserna baserat på de självrapporterade symtomen hos en patient, såsom smärta över och under höfterna vid fibromyalgi.

Även om det finns forskning om biomarkörerna för varje tillstånd (till exempel höga nivåer av vissa proteiner i blodet) är det svårt att med säkerhet veta om en person har ett tillstånd.

Ett annat problem: Det är uppskattat att kvinnor är sex gånger mer benägna att ha CFS än män och dubbelt så sannolikt att de har fibromyalgi.

Historiskt är kvinnor som rapporterar symtom som extrem smärta och trötthet beskrivna som “hysteriska” och behandlas ofta som om deras förhållanden var rent psykologiska.

Historiskt är kvinnor som rapporterar symtom som extrem smärta och trötthet beskrivna som “hysteriska” och behandlas ofta som om deras förhållanden var rent psykologiska.

När Brea blev sjuk för första gången berättade en neurolog honom att hans symptom troligen berodde på emotionellt trauma som glömdes i hans förflutna.

Den reumotóloga NYU Langone, Paula Rackoff, MD, säger denna typ av reaktion från det medicinska samfundet förändras, delvis tack vare en ökning av medicinska.

“Jag tror att kvinnor svarar på kvinnor annorlunda [än män]”, säger Rackoff.

Men skeptikerna är fortfarande störande vanliga.

Förra veckan skrev Gaga om sina problem på Instagram och försvarade sig från kritiker.

“Han använde ordet ‘lider’ inget medlidande eller uppmärksamhet, och jag blev besviken över att se människor på nätet tyder på att jag är dramatisk, jag gör eller spela offret att komma ur touring”, skrev han i en intervju. Legenden om fotot. “Jag använder ordet lider inte bara på grund av trauma och kronisk smärta har förändrat mitt liv, utan för att jag hindrar ett normalt liv”.

I sin nya dokumentär Netflix “Gaga: Five Foot Two” sänds nu kamerorna följer honom när han gråter, skakar och går till en läkare för att injicera brytpunkt, där en läkare injicerar droger i musklerna tätt att numera smärtan. strålar från höften till hans käke.

“Ser jag patetisk?” Frågar han i en scen som han gråter. “Jag är så generad.”

Gaga bryr mig inte bara om sin egen förmåga att hantera smärta, men även av andra personer med sjukdomen som inte har samma stödsystem eller medel för behandling, har hon.

Men även Gaga kämpar för att hitta läkare som vet hur man behandlar deras fortfarande mystiska tillstånd. I en annan scen, säger han att han föredrar smärtsamma behandlingar försöker sitta i en MRI maskin i timmar, bara för att få veta att ta Alvedon i slutet.

Brea skyller allvaret av hans tillstånd för den tid det tog honom att hitta en läkare som trodde henne.

“Jag tror att det finns en god chans att om jag hade fått diagnosen … innan hade jag inte så sjuk som han hade sickened mig, och kunde inte ha hamnat i en rullstol”, säger han och tillägger att i stället för att först vara skjuts att träna och arbeta. Antivirala mediciner och senaste livsförändringar har förbättrat hennes trötthet, men hon tror inte att det någonsin kommer att “bota” helt.

Hon är oroad över att missinformation och missdiagnoser kan göra det svårt för patienter att också få stöd från sina nära och kära.

“Jag tror att många människor slutar tro att det är i huvudet, och deras familjer vet ibland inte vad de ska göra, säger Brea. “Eftersom de vill stödja den person de älskar, men när experten säger något annorlunda är det väldigt svårt att veta vem som ska tro. Och att bristen på medicinsk utbildning [av läkare] hjälper till att separera familjer, människor som är frånskilda, familjemedlemmar som är åtskilda”.

Brea säger att medan hennes man var vid hennes sida från första dagen, beklagar hon fortfarande hur “hennes sjukdom” har påverkat hennes drömmar. “

Rackoff säger att de som misstänker att de har någon av de två sjukdomarna är helt berättigade för att söka en andra eller tredje åsikt. “Förkast inte din instinkt.”

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