Before you walk in the door to treat my daughter, try to understand what we I have gone through.<\/p>\n
She became ill about 14 years ago and was not diagnosed until ten years later. We did what everyone else does; went from doctor to doctor to no avail. She has been home-bound for two years. She worked for the same company for 18 years, initially in the office, then telecommuted full-time. Two years ago, her condition worsened. The company allowed her to work part-time, but she became so ill that she was unable to return to work when required. She lost her job.<\/p>\n
With her wishes and long-term hopes diminished, her goal is “to be well enough to work part-time.” She no longer dreams of vacations or having a family. She is gifted and talented, like so many of the other incredible ME\/CFS patients I encountered in my advocacy work, but she is also isolated, surrounded by four walls and dependent on the computer\/phone for human connection.<\/p>\n
I am not her hands-on caregiver. She is married. I help however I can; she knows I am there for her.<\/p>\n
If I think about it, it is almost too much. I am consumed by sadness for my 40+-year old child. How do you help this pwME, what can you say? I began to see a therapist to learn how to be emotionally supportive, to learn how to tolerate the unbearable. I volunteer and advocate unrelentingly.<\/p>\n
There are fewer than two dozen ME\/CFS specialists across the US. My daughter in California is fortunate now; she only has to travel 60 miles\u00a0each way to see hers.<\/p>\n
Estimating from the National Academy of Medicine report there are up to 300,000 Californians with ME\/CFS (3), an estimated 84 to 91 percent of whom are still undiagnosed or\u00a0misdiagnosed (4).<\/p>\n
So, as a mother,\u00a0I ask you to imagine that you have a child\/spouse who is unable to leave their home, or worse, their bed. Unable to work, with so much potential that cannot be used. Then, treat my daughter compassionately.<\/p>\n
– Bev., mother of a pwME<\/em><\/p>\n","protected":false},"excerpt":{"rendered":" Before you walk in the door to treat my daughter, try to understand what we I have gone through. She became ill about 14 years ago and was not diagnosed until ten years later. We did what everyone else does; went from doctor to doctor to no avail. She has been home-bound for two years. […]<\/p>\n","protected":false},"author":4,"featured_media":874,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"spay_email":""},"categories":[23],"tags":[],"jetpack_featured_media_url":"https:\/\/humansofchronicillness.org\/wp-content\/uploads\/2021\/05\/rodrigo-soares-c6SciRp2kaQ-unsplash.jpg","_links":{"self":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/873"}],"collection":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/users\/4"}],"replies":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/comments?post=873"}],"version-history":[{"count":0,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/873\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media\/874"}],"wp:attachment":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media?parent=873"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/categories?post=873"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/tags?post=873"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}