Når du er i konstant smerte og ingen tror på deg

Jennifer Brea var 28 år gammel da hun fant seg ikke i stand til å avslutte en tur eller sykle, hun dro hjem halvveis og sov i timevis.

“På en måte tenkte jeg:” Å, kanskje blir jeg bare gammel, “sier regissøren og hovedpersonen til den nye dokumentarfilmen” El Malavos “. “Jeg var bare 28 år gammel, og jeg tenkte:” Kanskje blir jeg bare gammel? «Og en del er fordi jeg fortsatte å gå til legen, og han sa til meg:« Du har det bra, du har det bra, du har det bra »».

Hun var ikke bra, hennes tretthet ble verre, og snart fikk hun doktorgradsstudent fra Harvard, Ph.D. Student kunne ikke fullføre setninger eller til og med sende en epost. Men legene kunne fortsatt ikke identifisere noe som sannsynligvis var galt med henne, og hun ble endelig fortalt at hun hadde en “konversjonsforstyrrelse”: en moderne versjon av hysteri.

Faktisk, Brea, som nå er 35 og bor i California, har kronisk utmattelsessyndrom, eller CFS, også kjent som myalgisk encefalomyelitt. Tilstanden forårsaker alvorlig utmattelse, hjerne tåke og ofte smerte. Han mistenker at hans sak ble utløst av en feber på en dag i 2011, selv om lite er kjent om årsakene til kronisk tretthet.

Hans dokumentar, som nå vises på IFC Center, chronicles hans kamp med CFS, og stigma knyttet til sykdommen lite kjent: fordi tilstanden er fortsatt under radaren, tror mange at de med CFS er bare lei Eller overdrive. symptomene

Brea-korstoget blir stadig mer populært, takket være til en håndfull kjendiser som har åpnet sine egne kamp mot kronisk og vanskelig å diagnostisere sykdommer.

Sanger Lady Gaga gjorde nyheter tidligere denne måneden da hun annonserte at hun led av fibromyalgi, en annen kronisk smerte tilstand. Hun avbrød en scene av en tur for å gjenopprette, men selv hun stod overfor reaksjonen av fans som ikke trodde hennes sykdom var ekte.

Ved begge forhold er det ingen blodprøve for å bekrefte en diagnose; heller, blir diagnosen som er utført i henhold til selv rapporterte symptomene hos pasienten, og en høy smerte over og under hoftene i tilfelle av fibromyalgi.

Selv om det er forskning på biomarkørene av hver tilstand (for eksempel høye nivåer av visse proteiner i blodet), er det vanskelig å vite med sikkerhet om en person har en tilstand.

Et annet problem: Det er anslått at kvinner er seks ganger mer sannsynlig å ha CFS enn menn og dobbelt så sannsynlig at de har fibromyalgi.

Historisk sett er kvinner som rapporterer symptomer som ekstrem smerte og tretthet beskrevet som “hysterisk” og blir ofte behandlet som om forholdene deres var rent psykologiske.

Historisk sett er kvinner som rapporterer symptomer som ekstrem smerte og tretthet beskrevet som “hysterisk” og blir ofte behandlet som om forholdene deres var rent psykologiske.

Når Brea ble syk for første gang, fortalt en nevrolog at hans symptomer var sannsynligvis på grunn av følelsesmessige traumer glemt i sin fortid.

NYU Langones reumotolog, Paula Rackoff, MD, sier at denne typen reaksjon fra det medisinske samfunnet endrer seg, takket være en økning i kvinnelige leger.

“Jeg tror kvinner reagerer på kvinner forskjellig [enn menn],” sier Rackoff.

Men skeptikere forblir forstyrrende.

I forrige uke rapporterte Gaga om sine problemer på Instagram, og forsvaret seg fra kritikere.

“Jeg bruker ordet” lider “ikke ut av synd eller oppmerksomhet, og jeg var skuffet over å se at folk online foreslår at jeg blir dramatisk, jeg oppfinner eller tolker offeret for å forlate turen,” skrev han i et intervju. Legenden om bildet. “Jeg bruker ordet lider ikke bare fordi traumer og kroniske smerter har forandret livet mitt, men fordi de hindrer meg fra å lede et normalt liv.”

I sin nye Netflix-dokumentar “Gaga: Five Foot Two”, kringkastet, følger kameraene ham når han gråter, rister og går til en lege for å injisere et utløserpunkt, hvor en lege injiserer medisiner i musklene stramt å dumpe smerten. utstråler fra hofte til kjeve.

“Ser jeg patetisk?” Han spør i en scene som han gråter. “Jeg er så flau.”

Gaga bryr seg ikke bare om sin egen evne til å håndtere smerte, men også andre med sykdommen som ikke har det samme støttesystemet, eller midler til behandling som hun har.

Men selv Gaga sliter med å finne leger som vet hvordan de skal behandle deres fremdeles mystiske tilstand. I en annen scene sier han at han foretrekker å prøve smertefulle behandlinger enn å sitte på en MR-maskin i flere timer, bare for å bli fortalt å ta Advil på slutten.

Brea skylder alvoret av hans tilstand for den tiden det tok ham å finne en lege som trodde henne.

«Jeg tror det er en god sjanse for at hvis de hadde diagnostisert meg … før, ville jeg ikke blitt så syk som jeg hadde, og jeg kunne ikke ha endt opp i rullestol,» sier han og legger til at i stedet for å hvile i utgangspunktet presset han seg å trene og jobbe. Antivirale medisiner og nylige endringer i livsstil har forbedret tretthet, men hun tror ikke det vil “helbrede” helt.

Hun er opptatt av at feilinformasjon og feildiagnoser kan gjøre det vanskelig for pasienter å få støtte fra sine kjære.

“Jeg tror mange mennesker ender opp med å tro at det er i hodet, og deres familier vet noen ganger ikke hva de skal gjøre,” sier Brea. “Fordi de vil støtte den personen de elsker, men når eksperten sier noe annet, er det veldig vanskelig å vite hvem som skal tro. Og den mangelen på medisinsk utdanning [av leger] bidrar til familier som adskiller seg, til personer som blir skilt, til familiemedlemmer som er skilt. “

Brea sier at mens hennes ektemann var ved siden av henne fra den første dagen, beklager hun fortsatt hvordan hun har påvirket drømmene hennes.

Rackoff sier at de som mistenker at de har en av de to sykdommene, er helt berettiget til å søke en andre eller tredje mening. “Ikke kast bort instinktet ditt.”

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