ME/CFS

me_and_cfs_ribbon_medium_orange_7nr4

I know I missed Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) week (May 12-17) but I wanted to post this now.

I was just visiting their Blue Ribbon Campaign for ME/CFS website and came across a ME/CFS Memorial. This particular page moved me to tears. There are memorial’s left of women, many of whom were in their 20’s and 30’s, who have taken their own lives to escape the horrid pain ME/CFS caused them. So many of these women (and some men) have left behind children, some even small children. Being a mother of small children myself, and someone who suffers from chronic illness and has experienced the stigma of doctor’s not taking me seriously or under medicating me, to read what these women endured and then left behind… to imagine, just briefly, the agony these women must have felt, broke my heart.

I’ve seen the tweets. I’ve even RT’d them. But to be honest, I hadn’t given it too much thought. It’s chronic fatigue syndrome, I thought. You sleep a lot. Right? I saw the Golden Girl’s episode where Bea Arthur trotted all over Florida looking for a doctor to believe that she was sick (one told her she was having a mid-life crisis and to dye her hair!), then she finally flew to New York and was diagnosed with CFS. But even then, (and this is back in the late 80’s early 90’s) her symptoms were no more than sore throat, headache, achiness, and being exhausted. Other than the fact that she was turning down some jobs, she didn’t seem like her world was going to end. I’m not downplaying the illness, I just never realized it was that bad. Unlike Lupus or MS, or cancer, I’ve never known someone with ME/CFS that I’ve been able to touch or see, to examine, so that I can know what the disease really does to a person. And we all know television is never accurate with these things.

But reading through that memorial section, that made it hit home. A light bulb went off like in those old cartoons and I realized this disease is as devastating as cancer, as MS, as Lupus. It doesn’t just deserve my retweets, it deserves a blog post. It deserve more awareness, because like endometriosis ME/CFS is a silent illness that doctors ignore and tells you that you don’t need medicine for. Like endometriosis, it’s a disease that is underestimated. And I’m sure, like endometriosis, it’s a disease that no one cannot relate to unless they too have it.

But the best I can do is write this post and give it another voice out in the blogosphere… out on the Internet… and in the world.

Advertisements

5 responses to “ME/CFS

  1. Endochick,

    So happy you wrote this post. I have met so many wonderful women on twitter recently during the Blue Ribbon campaign for M.E./C.F.S. I have exchanged numerous messages with many of them.

    @Killandra on twitter (Andrea) is very passionate about helping M.E./C.F.S. patients!!

    Through her (and through a ripple effect of people who know her), I’ve met @redtoffee, @perpetualspiral, and @Runefox… to name a few.

    I was happy to take part in the Blue Ribbon campaign and I am grateful to the women mentioned above for showing extreme support of the endometriosis cause as well!

    So glad you wrote a post about this important subject. Andrea has worked tirelessly on the Blue Ribbon campaign for M.E./C.F.S.

    🙂

    Jeanne

  2. Pingback: ME/CFS | OncoBlog

  3. autoimmunelife

    I didn’t even realize that ME/CFS week was happening – shows how much attention I’ve been able to give everything with all that’s been happening in my life. 😦
    My sister has CFS, my mother and I both have fibromyalgia. My sister is lucky that she got treatments early, and has a light case of it (at least at this point), my mother’s fibro has interfered with her life desperately. My sister’s CFS diagnosis actually came through the doctor who treated (and managed to mostly get into remission) my mother’s fibro…. but it can still be a very devastating disease, and it was pretty scary there for awhile. :/

  4. Dear Endochick, thank you SO much for posting this, it is quite rare that someone with one disease can empathise with another…you know how it is, you get socked into your own little world. Somehow I feel that if all we women with disabling chronic illnesses, that are consistently belittled and dismissed as depressed, could unite – we would be a mighty force!

    I’ve had ME for 23 years, raised 2 kids from almost flat on my back, know some who have died, and have progressed in severity, docs ignoring it all the while. (I am finally getting a little care now.) It can be VERY disabling though of course there is a range of severity. At its worst it is a living hell.

    So I thank you & salute you & right back atcha. I know Endi is very hard as well. Take Care, Aylwin xo

    • You are right, Aylwin, if we united we would make one mighty force indeed! You are very welcome for the post, what little it can do I hope it does. Raising kids while battling a chronic illness is hell. It’s a never-ending battle between wanting to be the best mom you can be and needing every prescious ounce of energy, sanity, breath you have in your person to take care of yourself so that you can be there for them. But that is still not as bad as being ignored, being labeled a hypochroniac by doctor’s and therapist’s – or being told you’re depressed. Yes, Aylwin, if we united – all of us women with chronic illnesses – our voices would outnumber those doctor’s, those therapist’s, and they wouldn’t be able to shut us up until they realized that the problem was never in our heads but in our bodies.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s