Ungaya phi xa oGqirha bengenakukuchonga?

Umxholo

• Kulapho waya khona kwi-Intanethi, wafumana amawaka abantu abaphila neempawu ezifanayo
• Ngoku wabelana ngebali lakhe, kuba akafuni ukuba abanye abantu bahambe bengafumaneki ngendlela enza ngayo
• Incoko ezinje ngezi sisiqalo esifunekayo sokutshintsha amaziko kunye nenkcubeko yethu - {textend} kunye nokuphucula ubomi babantu abaphila nezifo ezingaqondakaliyo nezingaphandwa.

Omnye umfazi wabelana ngebali lakhe ukunceda izigidi zabanye.

“Uyaphila.”

Yonke le nto isentlokweni yakho. ”

“Une hypochondriac.”

Ezi zizinto abantu abaninzi abakhubazekileyo nezigulo ezinganyangekiyo abazivileyo- {textend} kunye nomlweli wempilo, umlawuli we-documentary "Unrest" kunye no-TED uJen Brea uzivile zonke.

Yonke le nto yaqala xa wayenomkhuhlane wee-degrees ezingama-104 kwaye wayisusa. Wayeneminyaka engama-28 ubudala kwaye esempilweni, kwaye njengabantu abaninzi abalingana naye, wayecinga ukuba akanakuyoyiswa.

Kodwa kwakungapheli iiveki ezintathu, wayenesiyezi kangangokuba wayengakwazi ukuphuma endlwini. Ngamanye amaxesha wayengakwazi ukuzoba icala lasekunene lesangqa, kwaye ngamanye amaxesha wayengakwazi nokushukuma okanye ukuthetha kwaphela.

Wabona lonke uhlobo lonyango: i-rheumatologists, oogqirha bengqondo, i-endocrinologists, i-cardiologists. Akukho mntu wayenokufumanisa ukuba yintoni ingxaki kuye. Wahlala ebhedini yakhe phantse iminyaka emibini.

"Kwenzeka njani ukuba ugqirha wam ayenze into engeyiyo?" Uyazibuza. "Ndicinga ukuba ndinesifo esinqabileyo, into engazange yabonwa ngoogqirha."

Kulapho waya khona kwi-Intanethi, wafumana amawaka abantu abaphila neempawu ezifanayo

Abanye babo babebambelele ebhedini njengaye, abanye babenokusebenza ixesha lesingxungxo.

Uthi: "Abanye babegula kangangokuba kwafuneka baphile ebumnyameni buphela, bengakwazi ukunyamezela ilizwi lomntu okanye ukuchukumiseka ngumntu abamthandayo."

Ekugqibeleni, wafumanisa ukuba une-encephalomyelitis ye-myalgic, okanye njengoko yaziwa njalo, isifo sokudinwa okungapheliyo (i-CFS).

Olona phawu luxhaphakileyo lwesifo sokudinwa okungapheliyo kukudinwa okunzima ngokwaneleyo ukuba kungaphazamisa imisebenzi yakho yemihla ngemihla, engaphuculiyo ngokuphumla, kwaye ihlala iinyanga ezintandathu ubuncinci.

Ezinye iimpawu zeCFS zinokubandakanya:

• i-post-exertional malaise (PEM), apho iimpawu zakho ziba zibi ngakumbi emva kwayo nayiphi na imisebenzi yomzimba okanye yengqondo
• ukulahleka kwememori okanye ukugxila
• ndiziva ndingavuseleleki emva kokulala ebusuku
• ukulala okungapheliyo (kunye nezinye iingxaki zokulala)
• iintlungu zemisipha
• intloko rhoqo
• iintlungu ezidibeneyo ngaphandle kokubomvu okanye ukudumba
• umqala obuhlungu rhoqo
• Iithambo kunye nokudumba kwamalungu enkovu entanyeni nasekhwapheni

Njengamawaka abanye abantu, kuthathe iminyaka ngaphambi kokuba uJen afumane isifo.

Ngokwe-Institute of Medicine, ukusukela ngo-2015, i-CFS yenzeka malunga ne-836,000 ukuya kwi-2.5 yezigidi zaseMelika. Kuqikelelwa, nangona kunjalo, ukuba iipesenti ezingama-84 ukuya kuma-91 azikafumaneki.

"Yintolongo efanelekileyo," utshilo uJen, echaza ukuba umyeni wakhe angabaleka njani, unokuba buhlungu iintsuku ezimbalwa- {textend} kodwa ukuba uzama ukuhamba isiqingatha sebhulorho, unokubambeka ebhedini kangange veki.

Ngoku wabelana ngebali lakhe, kuba akafuni ukuba abanye abantu bahambe bengafumaneki ngendlela enza ngayo

Kungenxa yoko le nto elwela isifo sokudinwa okungapheliyo ukuba samkelwe, sifundwe kwaye siphathwe.

"Oogqirha abasinyangi kwaye inzululwazi ayisifundisi," utshilo. “[Isifo sokudinwa okungapheliyo] sesinye sezifo ezifumana imali encinci. EUnited States nyaka ngamnye, sichitha malunga ne-2 500 yeedola kwisigulana ngasinye esinoGawulayo, i-250 yeedola kwisigulana ngasinye se-MS, kunye ne- $ 5 nje ngonyaka ngesigulana ngasinye [seCFS]

Xa wayeqala ukuthetha malunga namava akhe nesifo sokudinwa okungapheliyo, abantu kwindawo yakhe baqala ukufikelela. Wazifumana ephakathi kweqela labasetyhini abaneminyaka engaphaya kweyi-20 ababeneengxaki zokugula.

Uthi: `` Into eyayibalulekile yayikukuba sasingathathelwa ngqalelo kangakanani, '' utshilo.

Elinye ibhinqa eline-scleroderma laxelelwa iminyaka ukuba konke oko kusentloko yalo, de umqala walo wonzakala kangangokuba alisayi kuphinda litye.

Omnye owayenomhlaza wesibeleko waxelelwa ukuba wayeqala ukuya exesheni. Ithumba lobuchwephesha lomhlobo wasekholejini lafunyanwa gwenxa njengoxinzelelo.

UJen uthi: “Nali ithuba, nangona ndinayo yonke into, ndisenalo ithemba.”

Ukholelwa ekomeleleni nasekusebenzeni nzima kwabantu abanesifo esingapheliyo sokudinwa. Ngokuzimela nokuzimanya kunye, bayigqibile into ekhoyo kwaye baye bakwazi ukubuyela ebomini.

Uthi: “Ekugqibeleni, ngosuku oluhle, ndakwazi ukushiya ikhaya lam,” utshilo.

Uyazi ukuba ukwabelana ngebali lakhe kunye namabali abanye kuya kwenza ukuba abantu bazi ngakumbi, kwaye anokufikelela kumntu ongakhange afumanise i-CFS - {textend} okanye nabani na osokolayo ukuzithethelela - {textend} ofuna iimpendulo.

Incoko ezinje ngezi sisiqalo esifunekayo sokutshintsha amaziko kunye nenkcubeko yethu - {textend} kunye nokuphucula ubomi babantu abaphila nezifo ezingaqondakaliyo nezingaphandwa.

Uthi: “Esi sigulo sindifundise ukuba inzululwazi kunye namayeza zizinto ezenziwa ngabantu. "Oogqirha, oososayensi kunye nabenzi bemigaqo-nkqubo nabo bayachaphazeleka kolo calanye lusichaphazela sonke."

Okona kubalulekileyo: “Kufuneka sizimisele ukuthi: Andazi. 'Andazi' yinto entle. ‘Andazi’ kulapho ukufumanisa kuqala khona. ”

UAlaina Leary ungumhleli, umphathi weendaba zosasazo kunye nombhali waseBoston, eMassachusetts. Okwangoku ungumncedisi womhleli we-Equally Wed Magazine kunye nomhleli weendaba zosasazo ezingenzi-nzuzo Sifuna iincwadi ezahlukeneyo.