Nā pilikia piliwi: No ke aha e hoʻāʻo nei kuʻu hoaaloha me Fibromyalgia e hoʻokahi-i luna iaʻu?

Anter

• ʻO wau, like ia me kāna mea maoli ke kamaʻilio aku nei iā ʻoe, "ʻAʻole hiki iaʻu ke kākoʻo iā ʻoe i kēia manawa."
• Ua akāka ʻo Sarah - {textend} ʻoiai ʻaʻole kuhikuhi - {textend} ʻaʻole hiki iā ia ke hōʻike iā ʻoe i kēia manawa. No laila, e launa me ia ma hea ʻo ia, a hoʻomaha iki mai ke kiʻi ʻana iā ia no ka commiseration a ʻōlelo aʻoaʻo paha.
• Inā kipaku ʻoe i kekahi mau mea ʻike, ʻike paha ʻoe he nui kāu mau hoaaloha e kaʻana like i kāu ʻike ma mua o kou manaʻo.

Welina mai i nā pilikia tissue, kahi kolamu aʻoaʻo mai ka comedian Ash Fisher e pili ana i ka maʻi pilina ʻo Ehlers-Danlos Syndrome (EDS) a me nā ʻino ʻē aʻe mau. He EDS ko Ash a he poli loa kona; ʻo ka loaʻa ʻana o kahi kolamu aʻoaʻo, he moemoeā ia. Loaʻa kāu nīnau iā Ash? E kiʻi aku ma o Twitter @AshFisherHaha.

Nā pilikia pili kele,

ʻIke koke ʻia wau me fibromyalgia. He mea hōʻoluʻolu e ʻike hope loa i ke kumu o koʻu ʻeha mau ʻana i nā manawa āpau. ʻO kuʻu hoa aloha (e kāhea iā ia ʻo Sarah) he fibromyalgia kekahi, a kaʻana like i nā mea ma ka pūnaewele. I ka manawa aʻu i hele aku ai iā ia no ka ʻōlelo aʻoaʻo a me ka commiseration, hoʻopilikia ʻo ia iaʻu a "hoʻokahi-ups" iaʻu me kāna mau ʻoi aku ʻoi loa o nā hōʻailona maikaʻi loa a hoʻomanaʻo iaʻu ʻo ia ka hapa nui o kahi moe, ʻoiai wau e hana nei i ka manawa piha. Hoʻohālikelike wau iaʻu e like me ka weliweli a makemake wau e hāmau e pili ana i kaʻu mau pilikia. E kamaʻilio wau iā ia e pili ana i ia?

- {textend} Manaʻo e like me ka Fraud

Aloha e like me ka hoʻopunipuni (akā ʻo wai ka hewa ʻole),

ʻO ka mea mua, hauʻoli wau i ka loaʻa ʻana o kahi hōʻailona a me ka wehewehe ʻana no kou ʻeha mau. Lana koʻu manaʻo e hoʻomaka ʻoe e loaʻa i kahi hōʻoluʻolu a me ka hoʻōla.

I kēia manawa i ka pilikia o kāu hoalauna ʻo Sarah. E kala mai iaʻu ke hiki aku ʻoe iā ia, pau kou manaʻo ʻole e pili ana i kāu mau hōʻailona ponoʻī. He mea hoʻonāukiuki paha kēlā. ʻAʻohe maopopo iaʻu ʻo Sarah, akā kānalua wau ke hana nei ʻo ia i kēia me ka manaʻo a i ʻole me ka hōʻino.

ʻO wau, like ia me kāna mea maoli ke kamaʻilio aku nei iā ʻoe, "ʻAʻole hiki iaʻu ke kākoʻo iā ʻoe i kēia manawa."

ʻO mākou nā kānaka - {textend} ʻo ia nā mea make wale a mākou - ʻaʻole pinepine ʻo {textend} i ka haʻi pololei ʻana i ka mea a mākou e makemake ai. Me he mea lā he manawa paʻakikī loa kā Sarah, a e kanikau nei paha no kona ola kahiko ma mua o ka hoʻokau ʻia ʻana o kāna mau hōʻailona mai ka limahana a i kahi moe.

ʻAʻole kēia manaʻo he kāne maikaʻi ʻole ʻo Sarah; ʻo ia wale nō ʻaʻole ʻo Sarah kahi koho maikaʻi no ke kākoʻo i kēia manawa.

ʻO kāu hōʻailona a me kāu mau hōʻailona he maoli.

E ʻoluʻolu e heluhelu hou i ka ʻōlelo i hala, me ka lohi a me ka leo. ʻO kāu hōʻailona a me kāu mau hōʻailona he maoli. ʻOiaʻiʻo kou ʻeha, a pono ʻoe e hōʻoia a kākoʻo ʻia.

ʻOiai ʻoi iki ka paʻakikī o kāu hihia (a i ʻole makemake ʻoe a i ʻole Sarah e hoʻokaʻawale iā ia), ʻaʻole ia he manaʻo e pani ʻoe e pili ana iā ia. ʻO ia wale nō e pono ʻoe e ʻike i kahi kumu ʻokoʻa o ke kākoʻo.

Ua akāka ʻo Sarah - {textend} ʻoiai ʻaʻole kuhikuhi - {textend} ʻaʻole hiki iā ia ke hōʻike iā ʻoe i kēia manawa. No laila, e launa me ia ma hea ʻo ia, a hoʻomaha iki mai ke kiʻi ʻana iā ia no ka commiseration a ʻōlelo aʻoaʻo paha.

Loaʻa iā ʻoe he mau hoaaloha ʻē aʻe me fibromyalgia a i ʻole nā ​​maʻi maʻi like e hiki ai iā ʻoe ke kiʻi? Ua hoʻāʻo ʻoe i nā pūʻulu kākoʻo pūnaewele? E hoʻāʻo e ʻimi i nā hui fibro ma Facebook a hui pū i kekahi. E nānā i ka fibro subreddit, kahi kokoke i 19,000 mau lālā.

E hoʻāʻo i ka wai ma ke kau ʻana inā makemake ʻoe, a i ʻole heluhelu wale i ka ʻōlelo a haʻi. E hoʻoholo koke paha ʻoe i nā hui e waiwai iā ʻoe (a ʻo wai ʻaʻole).

Hōʻoiaʻiʻo wau aia kahi wahi pūnaewele no ʻoe kahi āu e manaʻo ai e hoʻokipa ʻia ʻoe, ʻoluʻolu, a kākoʻo ʻia. E ʻimi a hoʻomanawanui paha e loaʻa. Lana ka manaʻo, e lilo paha ʻoe i mau hoaaloha me hiki iā ʻoe ke commiserate.

Ua kaʻana like ʻoe i kāu hōʻailona me nā hoaaloha a me nā mea aloha? E ʻike paha ʻoe ua ʻike ʻē aʻe ʻoe i nā poʻe ʻē aʻe me fibromyalgia.

ʻO Fibromyalgia kahi maʻi lōʻihi stigmatized i hoʻokuʻu ʻia e nā kauka a me nā laypeople he "i loko o kou poʻo." A ʻo kahi hopena, akahele kekahi poʻe e kaʻana like ana i kā lākou hōʻailona, ​​no ka mea ʻaʻole lākou makemake e hoʻokolokolo a haʻi ʻōlelo ʻia paha.

Inā kipaku ʻoe i kekahi mau mea ʻike, ʻike paha ʻoe he nui kāu mau hoaaloha e kaʻana like i kāu ʻike ma mua o kou manaʻo.

ʻOiai aia kekahi mau manawa e like me ia ala, ʻaʻole ka hoʻokūkū ka ʻeha mau. Manaʻo maoli wau i loko o koʻu puʻuwai ʻaʻohe mea e hoʻāʻo nei e hōʻeha i ka ʻeha a haʻi a i ʻole "kuʻi" i kekahi mea ʻē aʻe e ka mea maʻi loa. Ke hoʻāʻo nei mākou āpau i ka hiki e hoʻokele i kēia ao kaumaha, hana, luhi hoʻi.

I kekahi manawa ʻaʻole hiki iā mākou a makemake ʻole paha e hōʻike ke pilikia nui mākou i ka mālama ʻana i ka ʻeha a haʻi.Lana koʻu manaʻo e hiki koke iā ʻoe ke loaʻa ke kākoʻo paʻa. A lana koʻu manaʻo e hiki iā ʻoe a me Sarah ke noʻonoʻo pehea e lilo ai i mau hoaaloha me ka ʻole o ʻolua manaʻo ʻino e pili ana i kou aloha. Ke huki aku nei au nou.

ʻO Wobbly,

ʻAla

ʻO Ash Fisher kahi mea kākau a mea hoʻohenehene e noho nei me hypermobile Ehlers-Danlos maʻi maʻi. Ke loaʻa ʻole kahi wobbly-pēpē deer-lā, ke hele wāwae nei ʻo ia me kāna corgi, ʻo Vincent. Noho ʻo ia ma ʻOakland. E aʻo hou e pili ana iā ia ma kāna pūnaewele.