Ungaya Kuphi Lapho Odokotela Bengakwazi Ukukuxilonga?

-Delile

• Yilapho wangena ku-inthanethi, wathola izinkulungwane zabantu abaphila nezimpawu ezifanayo
• Manje usabelana ngendaba yakhe, ngoba akafuni ukuthi abanye abantu bahambe banganakwa ngendlela enza ngayo
• Izingxoxo ezifana nalezi ziyisiqalo esidingekayo sokushintsha izikhungo zethu namasiko ethu - {textend} nokwenza ngcono izimpilo zabantu abaphila nezifo ezingaqondakali nezingacwaningiswanga kahle

Owesifazane othile uhlanganyela indaba yakhe ukusiza izigidi zabanye.

“Uyaphila.”

Konke kusekhanda lakho. ”

“Uyi-hypochondriac.”

Lezi yizinto abantu abaningi abakhubazekile nezifo ezingalapheki abazizwile - {textend} nesishoshovu sezempilo, umqondisi wedokhumentari ethi "Unrest" kanye nozakwabo weTED uJen Brea uzizwe zonke.

Konke lokhu kuqale ngesikhathi ephethwe umkhuhlane wama-degree angama-104 futhi wawukhipha. Wayeneminyaka engama-28 ubudala futhi enempilo, futhi njengabantu abaningi abalingana naye, wayecabanga ukuthi akanakunqotshwa.

Kodwa kungakapheli amasonto amathathu, wayephethwe yisiyezi kangangokuthi wayengakwazi ukuphuma endlini yakhe. Kwesinye isikhathi wayengakwazi ukudweba uhlangothi olufanele lombuthano, futhi kwakukhona izikhathi lapho ayengakwazi ukunyakaza noma ukukhuluma nhlobo.

Wabona lonke uhlobo lomtholampilo: ama-rheumatologists, odokotela bengqondo, odokotela be-endocrinologists, izazi zenhliziyo. Akekho owakwazi ukuthola ukuthi yini eyayingahambi kahle ngaye. Wahlala embhedeni wakhe cishe iminyaka emibili.

“Kungenzeka kanjani ukuthi udokotela wami akuthole kabi kangaka?” uyazibuza. “Ngangicabanga ukuthi nginesifo esingajwayelekile, okuyinto odokotela ababengakaze basibone.”

Yilapho wangena ku-inthanethi, wathola izinkulungwane zabantu abaphila nezimpawu ezifanayo

Abanye babo bebebhajwe embhedeni njengaye, abanye bebengasebenza amatoho kuphela.

Uthi: “Abanye babegula kakhulu kwakudingeka baphile ebumnyameni ngokuphelele, bangakwazi ukubekezelela umsindo wezwi lomuntu noma ukuthintwa othandekayo.

Ekugcineni, kwatholakala ukuthi une-myalgic encephalomyelitis, noma njengoba yaziwa kakhulu, isifo sokukhathala okungamahlalakhona (CFS).

Uphawu oluvame kakhulu lwe-chronic fatigue syndrome ukukhathala okunzima ngokwanele ukuphazamisa imisebenzi yakho yansuku zonke, engathuthuki ngokuphumula, futhi ihlala okungenani izinyanga eziyisithupha.

Ezinye izimpawu zeCFS zingafaka:

• i-post-exertional malaise (PEM), lapho izimpawu zakho ziba zimbi kakhulu ngemuva kwanoma yikuphi ukusebenza ngokomzimba noma kwengqondo
• ukulahleka kwememori noma ukugxila
• ngizizwa ngingaqabulekile ngemuva kokulala ebusuku
• ukuqwasha okungapheli (nezinye izinkinga zokulala)
• ubuhlungu bemisipha
• ikhanda elibuhlungu njalo
• ubuhlungu obuhlangene obuningi ngaphandle kokubomvu noma ukuvuvukala
• umphimbo obuhlungu njalo
• ama-lymph node athambile futhi avuvukile entanyeni nasemakhwapheni

Njengezinkulungwane zabanye abantu, kwathatha iminyaka ukuthi uJen atholakale enesifo.

Ngokusho kwe-Institute of Medicine, kusukela ngo-2015, i-CFS yenzeka kubantu baseMelika abangaba yizigidi ezingama-836,000 kuya ku-2,5. Kulinganiselwa ukuthi noma kunjalo, ukuthi amaphesenti angama-84 kuya kuma-91 awakatholakali okwamanje.

"Kuyijele elijwayelekile," kusho uJen, echaza ukuthi uma umyeni wakhe eyogijima, angahle abe buhlungu izinsuku ezimbalwa - {textend} kodwa uma ezama ukuhamba uhhafu webhulokhi, angahle abhajwe embhedeni isonto lonke.

Manje usabelana ngendaba yakhe, ngoba akafuni ukuthi abanye abantu bahambe banganakwa ngendlela enza ngayo

Kungakho elwela ukuthi isifo sokukhathala okungamahlalakhona saziwe, sifundwe futhi siphathwe.

“Odokotela abaselaphi futhi nesayensi ayisifundisi,” usho kanje. “I-Chronic fatigue syndrome ingesinye sezifo ezingakhokhelwa kakhulu. E-U.S. Unyaka nonyaka, sisebenzisa cishe ama- $ 2 500 ngesiguli ngasinye esine-AIDS, ama- $ 250 ngesiguli ngasinye se-MS, ne- $ 5 nje ngonyaka ngesiguli ngasinye [seCFS]. ”

Lapho eqala ukukhuluma ngokuhlangenwe nakho kwakhe nge-chronic fatigue syndrome, abantu emphakathini wakubo baqala ukufinyelela. Wazithola ephakathi kweqoqo labesifazane abasekupheleni kweminyaka engama-20 ababebhekene nezifo ezimbi.

Uthi: “Okumangazayo ukuthi bekungakanani ubunzima ebesibuthathelwa phezulu.

Owesifazane othile one-scleroderma watshelwa iminyaka ukuthi konke kwakusekhanda lakhe, kuze kube yilapho umqala wakhe ulimala kakhulu ukuthi ngeke esakwazi ukudla futhi.

Omunye onomdlavuza we-ovari utshelwe ukuthi ubesanda kuqala ukuya esikhathini. Isimila sobuchopho bomngane wasekolishi asiboniswanga kahle njengokukhathazeka.

UJen uthi, “Nansi ingxenye enhle, ngisenalo ithemba.”

Ukholelwa ekuqineni nasekusebenzeni kanzima kwabantu abane-syndrome engapheli. Ngokuzimela kanye nokuhlangana ndawonye, ​​badle lokho okucwaningwayo okukhona futhi bakwazi ukubuyisa izingcezu zempilo yabo.

Uthi: “Ekugcineni, ngosuku oluhle ngakwazi ukuphuma ekhaya.

Uyazi ukuthi ukwabelana ngendaba yakhe nezindaba zabanye kuzokwenza abantu abaningi bazi, futhi kungafinyelela kumuntu othole i-CFS engatholakali - {textend} noma noma ngubani onenkinga yokuzikhulumela - {textend} odinga izimpendulo.

Izingxoxo ezifana nalezi ziyisiqalo esidingekayo sokushintsha izikhungo zethu namasiko ethu - {textend} nokwenza ngcono izimpilo zabantu abaphila nezifo ezingaqondakali nezingacwaningiswanga kahle

Uthi: “Lokhu kugula kungifundise ukuthi isayensi nezokwelapha kuyimizamo yabantu. "Odokotela, ososayensi nabenzi bezinqubomgomo abavikelekile ekucwaseni okufanayo okuthinta sonke."

Okubaluleke kakhulu: “Kumele sizimisele ukuthi: Angazi. 'Angazi' kuyinto enhle. ‘Angazi’ yilapho ukutholakala kuqala khona. ”

U-Alaina Leary ungumhleli, umphathi wezokuxhumana nomlobi waseBoston, eMassachusetts. Njengamanje ungumsizi womhleli we-Equally Wed Magazine futhi ungumhleli wezokuxhumana wenhlangano engenzi nzuzo Sidinga Amabhuku Ahlukahlukene.