I\u2019m one of the lucky ones. My ME\/CFS is less severe than it is for many. I\u2019m able to hold down a job, thanks to a very understanding boss who lets me work from home when necessary and alter my schedule and commute as needed. But in 19 years on the job, I have never made it to a social event with my coworkers after hours. I have never made it through an all-day staff retreat or attended conferences or events that required travel. I will never be promoted any higher in spite of my experience, skills and ambition because I don\u2019t have the physical or emotional capacity to take on more responsibility.<\/p>\n
I\u2019m lucky that some of my family members understand and are compassionate and that I have a kind and supportive husband. But I\u2019m unable to sustain any friendships outside work and family except with one lovely person who accepts that I may only see her three or four times per year. Even long-distance friends fell off when I couldn\u2019t attend weddings or birthdays or help with their crises.<\/p>\n
I\u2019m lucky that I can exercise a little bit, walk a couple of blocks and do a few minutes of stretching and strengthening. And I\u2019m lucky to live in a city full of culture, art and music. But I can\u2019t walk through museums, art galleries, farmers\u2019 markets, or street fairs. I haven\u2019t been out of the house after 10 p.m. for two decades, so I\u2019ve missed all the concerts, celebrations and parties. There\u2019s no shopping sprees with friends or running to the mall.<\/p>\n
I\u2019m lucky that I\u2019ve found some wonderful health care providers who understand the disease and believe that I know my body best. But none pretend to have a cure or even optimism that I\u2019ll ever be fully well again. And after years of doctors who told me I was crazy or depressed, I live with the constant anxiety that this one doctor who will work with me might leave my HMO or move out of town.<\/p>\n
I\u2019m lucky that many people have asked questions, listened and tried to understand what ME\/CFS is all about. But there are those who think I\u2019m lazy or a hypochondriac, a whiner, a loser. They don\u2019t say it outright. They say: \u201cYeah, I\u2019m tired too, but I still manage;\u201d \u201cHow are we supposed to do anything when you can\u2019t be out for more than an hour?\u201d \u201cYou should try meditation\/chamomile\/a glass of wine\/yoga\/a gluten-free diet\u201d \u201cWhy do you have a disability placard when you\u2019re not disabled?\u201d I remember every comment no matter how hard I try to let it go.<\/p>\n
I\u2019m lucky that sometimes I can sleep, and I feel almost normal. But other times, weeks go by with such bad sleep that my brain turns to mush, and I become less and less able to do the little things I could do just weeks before. And the roller coaster never stops.<\/p>\n","protected":false},"excerpt":{"rendered":"
Humans of ME\/CFS I\u2019m one of the lucky ones. My ME\/CFS is less severe than it is for many. I\u2019m able to hold down a job, thanks to a very understanding boss who lets me work from home when necessary and alter my schedule and commute as needed. But in 19 years on the job, […]<\/p>\n","protected":false},"author":1,"featured_media":447,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"spay_email":""},"categories":[1],"tags":[],"jetpack_featured_media_url":"https:\/\/humansofchronicillness.org\/wp-content\/uploads\/2020\/07\/julie_m.png","_links":{"self":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/453"}],"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\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/comments?post=453"}],"version-history":[{"count":0,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/453\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media\/447"}],"wp:attachment":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media?parent=453"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/categories?post=453"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/tags?post=453"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}