Ma hea e hiki ai iā ʻoe ke hele ke hiki ʻole i nā kauka ke kuhikuhi iā ʻoe?

Anter

• ʻO ia ka manawa i hele ai ʻo ia i ka pūnaewele, a loaʻa he mau kaukani mau kānaka e noho nei me nā ʻōuli like
• I kēia manawa ke kaʻana nei ʻo ia i kāna moʻolelo, no ka mea ʻaʻole makemake ʻo ia i kahi poʻe ʻē aʻe e hōʻike hewa ʻole e like me kāna ʻano
• ʻO nā kamaʻilio e like me kēia kahi hoʻomaka kūpono e hoʻololi i kā mākou ʻoihana a me kā mākou moʻomeheu - {textend} a me ka hoʻomaikaʻi ʻana i ke ola o ka poʻe e noho nei me nā maʻi ʻike ʻole a noiʻi ʻole ʻia.

Ke hāʻawi nei kekahi wahine i kāna moʻolelo e kōkua ai i mau miliona o ka poʻe ʻē aʻe.

“Maikaʻi ʻoe.”

“Aia i kou poʻo nā mea āpau.”

"He hypochondriac ʻoe."

ʻO kēia mau mea i lohe ʻia e ka poʻe me ke kino kīnā a me nā maʻi maʻi mau - {textend} a me ka mea hoʻoikaika kino, ka luna hoʻomalu o ka pepa kiʻi "Unrest" a me ka hoa TED ʻo Jen Brea i lohe iā lākou āpau.

Ua hoʻomaka ia a loaʻa iā ia ke kuni he 104 degere a palaki ʻo ia. He 28 kona mau makahiki a olakino, a e like me nā poʻe o kona mau makahiki, ua manaʻo ʻo ia ʻaʻole hiki ke lanakila.

Akā i loko o ʻekolu mau pule, luʻuluʻu loa ʻo ia ʻaʻole hiki iā ia ke haʻalele i kona hale. I kekahi manawa ʻaʻole hiki iā ia ke huki i ka ʻaoʻao ʻākau o ka pōʻai, a aia kekahi mau manawa ʻaʻole hiki iā ia ke neʻe a ʻōlelo paha.

Ua ʻike ʻo ia i kēlā me kēia ʻano kauka: rheumatologists, psychiatrists, endocrinologists, cardiologists. ʻAʻole hiki i kekahi ke noʻonoʻo i ka mea i hewa iā ia. Ua paʻa ʻo ia i kona wahi moe no ʻaneʻane ʻelua mau makahiki.

"Pehea i loaʻa ai i kaʻu kauka ka hewa?" haohao ʻo ia. "Ua manaʻo wau ua loaʻa wau i kahi maʻi laha ʻole, kahi mea a nā kauka i ʻike ʻole ai."

ʻO ia ka manawa i hele ai ʻo ia i ka pūnaewele, a loaʻa he mau kaukani mau kānaka e noho nei me nā ʻōuli like

Paʻa kekahi o lākou i ka moena e like me ia, hiki i kekahi poʻe ke hana hapa manawa wale nō.

"Ua maʻi nui kekahi e ola lākou i ka pouli piha, ʻaʻole hiki ke hoʻomanawanui i ke kani o kahi leo kanaka a i ʻole ka pā o kahi mea aloha," i ʻōlelo ʻo ia.

ʻO ka mea hope loa, ua ʻike ʻia ʻo ia me ka myalgic encephalomyelitis, a i ʻole e like me ka mea i ʻike mau ʻia, maʻi luhi mau loa (CFS).

ʻO ka ʻōuli maʻamau o ka maʻi luhi mau loa ka luhi i lawa nui e hoʻopilikia i kāu hana i kēlā me kēia lā, ʻaʻole hoʻomaikaʻi me ka hoʻomaha, a mau no ʻeono mahina.

Pili pū kekahi mau ʻōuli ʻē aʻe o CFS:

• malaise post-exertional (PEM), kahi eʻoi aku ai ka maikaʻi o kāu mau hōʻailona ma hope o kekahi hana kino a noʻonoʻo paha
• nalo o ka hoʻomanaʻo a me ka noʻonoʻo paha
• me ka hauʻoli ʻole ma hope o ka hiamoe ʻana o ka pō
• hiamoe mau (a me nā maʻi hiamoe ʻē aʻe)
• ʻeha ʻeha
• ʻeha poʻo poʻo pinepine
• ʻeha lehulehu me ka ʻulaʻula ʻole a me ka pehu ʻole
• ʻāʻī pinepine ʻāʻī
• palupalu a pehu nā lymph node i kou ʻāʻī a me kou ʻāpana lima

E like me nā tausani o nā poʻe ʻē aʻe, he mau makahiki ka lōʻihi e ʻike ʻia ʻo Jen.

Wahi a ka Institute of Medicine, e like me ka 2015, loaʻa ʻo CFS ma kahi o 836,000 a 2.5 miliona mau ʻAmelika. Ua manaʻo ʻia naʻe, ʻaʻole 84 i ka 91 pākēneka i ʻike mua ʻia.

"He hale paʻahao maʻamau ia," wahi a Jen, e wehewehe ana inā hele kāna kāne no ka holo, ʻeha paha ʻo ia no kekahi mau lā - {textend} akā inā hoʻāʻo ʻo ia e hele i ka hapalua palaka, paʻa paha ʻo ia i ka moena no hoʻokahi pule.

I kēia manawa ke kaʻana nei ʻo ia i kāna moʻolelo, no ka mea ʻaʻole makemake ʻo ia i kahi poʻe ʻē aʻe e hōʻike hewa ʻole e like me kāna ʻano

ʻO ia ke kumu e hakakā nei ʻo ia no ka maʻi luhi mau loa e ʻike ʻia, aʻo ʻia a mālama ʻia.

"ʻAʻole mālama nā kauka iā mākou a ʻaʻole aʻo ʻia ka ʻepekema iā mākou," i ʻōlelo ʻo ia. “[Chronic tired syndrome] kekahi o nā maʻi i loaʻa kālā ʻole. Ma ka US i kēlā me kēia makahiki, hoʻolilo mākou i $ 2,500 ma kēlā me kēia mea maʻi o ka maʻi AIDS, $ 250 no ka mea maʻi MS, a he $ 5 wale nō i kēlā me kēia makahiki no ka [CFS] hoʻomanawanui. "

I ka wā i hoʻomaka ai ʻo ia e ʻōlelo e pili ana i kāna ʻike me ka maʻi luhi mau loa, ua hoʻomaka ka hele ʻana o ka poʻe o kona kaiāulu. Ua ʻike ʻo ia iā ia iho i waena o kahi hui o nā wahine i ka hopena o 20 e pili ana i nā maʻi koʻikoʻi.

"ʻO ka mea e pāhaʻi nei, ʻo ia wale nō ka nui o nā pilikia a mākou e lawe ʻia nei i mea nui," i ʻōlelo ʻo ia.

Ua haʻi ʻia i hoʻokahi wahine me ka scleroderma no nā makahiki he nui i loko o kona poʻo, a hiki i ka hōʻino ʻana o kāna esophagus ʻaʻole hiki iā ia ke ʻai hou.

Ua haʻi ʻia kekahi me ka maʻi ʻaʻai ovarian e ʻike wale ana ʻo ia i ka menopause mua. Ua kuhi hewa ʻia kahi tumo o ka hoaaloha o ke koleke me ke ʻano hopohopo.

"Eia ka ʻāpana maikaʻi," wahi a Jen, "me nā mea āpau, he lana koʻu manaʻo."

Manaʻoʻiʻo ʻo ia i ke kūpaʻa a me ka hana ikaika o ka poʻe me ka maʻi luhi mau. Ma o ka hoʻolaha pilikino ʻana a me ka hui pū ʻana, ua ʻai lākou i ka noiʻi a hiki ke hoʻihoʻi i nā ʻāpana o ko lākou ola.

"Ma ka hopena, i kahi lā maikaʻi, ua hiki iaʻu ke haʻalele i koʻu home," i ʻōlelo ʻo ia.

ʻIke ʻo ia i ka hoʻokaʻawale ʻana i kāna moʻolelo a me nā moʻolelo o nā poʻe ʻē aʻe e hoʻomaopopo ai ka poʻe hou aku, a hiki paha i kahi mea i ʻike ʻole ʻia ka CFS - {textend} a i ʻole kekahi e ʻaʻa nei e kākoʻo iā lākou iho - {textend} pono i nā pane.

ʻO nā kamaʻilio e like me kēia kahi hoʻomaka kūpono e hoʻololi i kā mākou ʻoihana a me kā mākou moʻomeheu - {textend} a me ka hoʻomaikaʻi ʻana i ke ola o ka poʻe e noho nei me nā maʻi ʻike ʻole a noiʻi ʻole ʻia.

"Ua aʻo mai kēia maʻi iaʻu ʻo ka ʻepekema a me ka lāʻau lapaʻau he hana nui i ke kanaka," i ʻōlelo ʻo ia. "ʻAʻole pale aku nā kauka, nā ʻepekema, a me nā mea hana politika i nā bias like e hoʻopili iā mākou āpau."

ʻO ka mea nui: “Pono mākou e mākaukau e ʻōlelo: ʻAʻole au i ʻike. 'ʻAʻole maopopo iaʻu' he mea nani. 'ʻAʻole maopopo iaʻu kahi e hoʻomaka ai ka loaʻa ʻana. "

He luna hoʻoponopono ʻo Alaina Leary, he luna media media, a he mea kākau mai Boston, Massachusetts. ʻO ia ka mea kōkua hoʻoponopono o Equ Magazine Wed Magazine a me kahi hoʻoponopono media media no ka nonprofit We Need Diverse Books.