Blogging for CFS/ME: Honor those to whom honor is due
Today is blogging for Chronic Fatigue Syndrome/ME Awareness Day.
The one thing I knew going into the Neurologists office was that I more scared of getting diagnosed with CFS/ME than with a neurological condition which had a chance of killing me in 5-7 year. Lupus? Sign me up! Anything but Chronic Fatigue Syndrom/ME. Why was I so afraid? It wasn’t because I was ignorant of CFS/ME but rather I knew both of it and what society thought about those who had it.
Certainly, I know, like many with chronic/neuro conditions about Fatigue, but CFS is more than that, and the stigma attached to this condition, a disease, a disability few will try to understand is horrific. In watching a special program on CFS/ME I learned it was nothing new, having had outbreaks since the 50’s (the people were put in “sanitariums” aka mental asylums), and the famous outbreak in the 70’s which the CDC refused to investigate. Leaving a doctor out there still storing over 1,000 samples, waiting until the day the CDC decides it cares. He told tales of people who killed themselves willing their body to the center of disease control for an autopsy. They were willing to die “if only this can be proved to be a real disease.” The CDC cremated the bodies as no autopsies are held for suicides from people with mental illnesses.
So yes, a disease in which some will recover a portion of their abilities after years and no one knows why; a disease which puts you into a silent empty space where “The world” continues on, but you do not. Each day is lived, survived and your progress against personal goals in measured in inches while the one word on the lips of someone, whether relative, doctor, PT or what used to be a friend is “lazy”, “Just doesn’t want to try.”
Laura Hilldenbrand who wrote the best-selling book Seabiscuit (made into a film), does not do signings, or appear at bookstores because she has CFS/ME. In fact, it was the fact the someone could do something “successful” and yet openly admit that they have a condition which debilitates them in the way CFS does which brought North America slightly away from names like “yuppie flu”. We live in the west were what you “Do” defines you, so how to classify a woman who was bedridden for six years, then worked on the book for four more? Is she a success, lazy, or unbelievable determined in reclaiming herself against a misunderstood condition? Finishing the book caused a severe relapse and in a quote from Laura which most CFS/ME people can identify with “You want so much to defy this illness and live on your own terms. I hoped I could get away with it, but I couldn’t.”
You live, but not like others. Yet people have CFS/ME and do work, as they can, take care of children, as they can, focus themselves on the victories of progress measured against the realities of their condition and the goals they set themselves. Because who else will understand what it takes for someone with CFS/ME to finish a year of school or uni; to continue, as they can, on an ongoing art, photography, writing project. Respect those who live with CFS, as they have to listen to not only the voices from society but the voices within themselves, that they “should” do more, or “I heard this works” all the while trying to staying on track in completing something that is important to them. Something that might take an able bodied person a day or two.
I remember the first major hill I did in my manual wheelchair, a chair I had been told I was “too weak” to use, and would be “too painful” to operate. I did it on oxygen and I did it four inches at a time. And when I got to the top, I knew that the people walking by, talking on their lunch breaks did not care or notice that as an accomplishment. Yet for me, I had accomplished in my will and heart as much in the time it took me to make it to the top, and not give up, as when I was able bodied and ran the LA marathon.
People with CFS/ME go on, and I cannot articulate their life but I can ask that people remember and honor the accomplishments which occur behind curtains and closed doors. That often iron will and an ability to accept the bad, the pain, the vertigo, the fatigue and yet STILL look ahead to completing the hearts desire is one which should be acknowledged.
No, someone with CFS/ME is not going to be getting headlines for doing seven marathons in seven days or wheeling across some country. In fact, they are likely not to be getting headlines at all as their illness cocoons their life away from public view. But thanks to the internet and people like RachelCreative, we can see and hopefully understand more about the day to day, hour to hour life of CFS/ME (click the link to read other bloggers on CFS/ME).
As a follow-up, I did, at two later meetings, ask the Neuro if maybe she was wrong and I DID have CFS. Or to put it bluntly, I decided I would rather openly acknowledge my prejudice and fear of what people would think of me and live, than have a “cool” or socially acceptable condition and not. And that’s what people forget, people with CFS/ME do live, do have good times, do laugh, do spend the same minutes of a day as everyone else, just not in the same way. It is just many of us don’t hold on so long, or have to mentally fight so hard, for that oasis of energy.
The one thing I knew going into the Neurologists office was that I more scared of getting diagnosed with CFS/ME than with a neurological condition which had a chance of killing me in 5-7 year. Lupus? Sign me up! Anything but Chronic Fatigue Syndrom/ME. Why was I so afraid? It wasn’t because I was ignorant of CFS/ME but rather I knew both of it and what society thought about those who had it.
Certainly, I know, like many with chronic/neuro conditions about Fatigue, but CFS is more than that, and the stigma attached to this condition, a disease, a disability few will try to understand is horrific. In watching a special program on CFS/ME I learned it was nothing new, having had outbreaks since the 50’s (the people were put in “sanitariums” aka mental asylums), and the famous outbreak in the 70’s which the CDC refused to investigate. Leaving a doctor out there still storing over 1,000 samples, waiting until the day the CDC decides it cares. He told tales of people who killed themselves willing their body to the center of disease control for an autopsy. They were willing to die “if only this can be proved to be a real disease.” The CDC cremated the bodies as no autopsies are held for suicides from people with mental illnesses.
So yes, a disease in which some will recover a portion of their abilities after years and no one knows why; a disease which puts you into a silent empty space where “The world” continues on, but you do not. Each day is lived, survived and your progress against personal goals in measured in inches while the one word on the lips of someone, whether relative, doctor, PT or what used to be a friend is “lazy”, “Just doesn’t want to try.”
Laura Hilldenbrand who wrote the best-selling book Seabiscuit (made into a film), does not do signings, or appear at bookstores because she has CFS/ME. In fact, it was the fact the someone could do something “successful” and yet openly admit that they have a condition which debilitates them in the way CFS does which brought North America slightly away from names like “yuppie flu”. We live in the west were what you “Do” defines you, so how to classify a woman who was bedridden for six years, then worked on the book for four more? Is she a success, lazy, or unbelievable determined in reclaiming herself against a misunderstood condition? Finishing the book caused a severe relapse and in a quote from Laura which most CFS/ME people can identify with “You want so much to defy this illness and live on your own terms. I hoped I could get away with it, but I couldn’t.”
You live, but not like others. Yet people have CFS/ME and do work, as they can, take care of children, as they can, focus themselves on the victories of progress measured against the realities of their condition and the goals they set themselves. Because who else will understand what it takes for someone with CFS/ME to finish a year of school or uni; to continue, as they can, on an ongoing art, photography, writing project. Respect those who live with CFS, as they have to listen to not only the voices from society but the voices within themselves, that they “should” do more, or “I heard this works” all the while trying to staying on track in completing something that is important to them. Something that might take an able bodied person a day or two.
I remember the first major hill I did in my manual wheelchair, a chair I had been told I was “too weak” to use, and would be “too painful” to operate. I did it on oxygen and I did it four inches at a time. And when I got to the top, I knew that the people walking by, talking on their lunch breaks did not care or notice that as an accomplishment. Yet for me, I had accomplished in my will and heart as much in the time it took me to make it to the top, and not give up, as when I was able bodied and ran the LA marathon.
People with CFS/ME go on, and I cannot articulate their life but I can ask that people remember and honor the accomplishments which occur behind curtains and closed doors. That often iron will and an ability to accept the bad, the pain, the vertigo, the fatigue and yet STILL look ahead to completing the hearts desire is one which should be acknowledged.
No, someone with CFS/ME is not going to be getting headlines for doing seven marathons in seven days or wheeling across some country. In fact, they are likely not to be getting headlines at all as their illness cocoons their life away from public view. But thanks to the internet and people like RachelCreative, we can see and hopefully understand more about the day to day, hour to hour life of CFS/ME (click the link to read other bloggers on CFS/ME).
As a follow-up, I did, at two later meetings, ask the Neuro if maybe she was wrong and I DID have CFS. Or to put it bluntly, I decided I would rather openly acknowledge my prejudice and fear of what people would think of me and live, than have a “cool” or socially acceptable condition and not. And that’s what people forget, people with CFS/ME do live, do have good times, do laugh, do spend the same minutes of a day as everyone else, just not in the same way. It is just many of us don’t hold on so long, or have to mentally fight so hard, for that oasis of energy.
Labels: CFS/ME
posted by Elizabeth McClung at 11:17 PM
16 Comments:
Wow. Thanks for this post Elizabeth. An excellent piece.
And thanks (again!) for the name check :o) I feel so fortunate to have you and your blog.
Great post about the possibilities of having good times too. I really feel for those who are newly diagnosed and haven't yet come to a place where they can begin to adjust and grab fleeting pleasures on which they can build. It takes a long time, persistence and tenacity to get to where you are today.
Thanks for posting about CFS/ME. I have fibromyalgia which has some symptoms (and stigma) in common with CFS. People don't realize that these diseases can be very debilitating. I also have Lupus and CVID, a primary immune deficiency. but for many years my Lupus & CVID were undiagnosed, so I know what it's like to be very ill and to receive no understanding or respect. Some in my family thought all I needed was a little motivation & will power - just to try harder. They had no idea how hard I had to "try' every day just to accomplish the simplest of tasks. Some acted that my being at home, not working, not participating in activities I loved was just a "life-style" choice. Like anyone would give up everything they loved to do, in exchange for a life of exhaustion, pain and isolation.
Sharon
Elizabeth, thank you for your articulate and kind message today.
LFS, CFS for 16 years? lost count: )
Another powerful and thought provoking post. You rock sis!
I can't believe that twenty years after my mum suffered from ME/CFS people still need to be convinced that it is real.
My mum was knocked from pillar to post trying to find out what was wrong with her until she was referred to a specialist, who explained to her exactly what it was, that it was very REAL and she would get better.
Homoeopathy was the thing that worked for my mum and she actually recovered relatively quickly in proportion to the amount of time she'd suffered (both physically and psychologically) at the hands of the conventional medical system.
She did have relapses for a year or two after her main illness was treated but she's completely back to normal now.
Homoeopathy doesn't work for everyone but if you feel like you're beating your head on a brick wall, trying to get your doctors to listen to you then that might be an avenue you want to explore.
Hello Squirrel Queen:
I just have to thank you, Beth, for NOT being an advertising writer. If you were, you'd have far too many people buying the products you wrote about, and spending money we don't have.
You are a wonderful writer! I learn something new every day from you. I too feel very fortunate to have found your blog. The squirrels led me to it, you know. They know what's best for people; it's a conspiracy, but they're not ready to reveal their Master Plan!
That was amazing! Thank you fo writing it.
Excellent post. Thank you for writing so eloquently about the stigma, the battle to be believed.
(I'd go on for a while, but I'm too tired to think)
Thank you Elizabeth. Amazing, articulate post that really touched me. I actually read your post, teared up, and had to wait a few hours to come back and comment. If I'm told one more time that I'm just "lazy" or "all in my head" or "need to apply myself", I will whop someone.
Tammy
Diagnosed with CFS and FMS 4 years ago, still struggling, but living and loving life.
Rachelcreative: Thanks for starting or advertising the day to get my mind in gear of what CFS/ME meant for me. I feel the same way about your blog, and art, fortunate, thankful.
Cusp: I am not so much I am about "fleeting pleasures" but about medical excess but it is a fine line, I could identify with Laura saying you want to defy your illness and live life on your own terms, but that just isn't possible. And yet every time, I hope to get away with it too!
SharonMV: Linda says, "Wow, she has really been through it" (I think "it" being the equivilent of the wars), yeah, nothing like watching your extended family bad mouth you at gatherings becuase you are "still slacking". Yes, the "lifestyle choice" because, when getting dressed is HARDER than your last job, that must be why you CHOSE this? Sorry, bit of my own rant coming through. I am sorry you had to hear and live that, and glad you are strong enough to have your own voice still.
Miss Fairy Sparkle: people with will power, determination and tenacity deserve thier accomplishments recognized, and I think you are one of them.
Cheryl G: It would be nice if CFS/ME was blogged with the zeal around the feminist blogsphere as other things, but there is always next year. I am trying to stop being cynical and start saying, they just haven't realized they are allies yet.
Gaina: I really can't believe it either but a lot of doctors were trained, are still trained by people who think it is "all in thier head" and if they have "enough willpower/motivation" etc they can stop having CFS - when did medicine and motivational speaking get switched?
Actually someone told me recently that since convential medicine doesn't seem to work, the trick is finding a specialist who cares AND knows enough - I am glad she is one of those who recovered.
Neil: If you think I was selling CFS, um, I must be writing backwards. I just felt that, even when we don't understand everything about a condition we can understand enough about it and about humans to see what I supposed tenacity and endurance to LIVE when your body and society tells you otherwise is a great thing. It is something to be celebrated, that people with CFS/ME show us, in thier accomplishments, unheralded, that humans can be more!
Thanks for being here to comment and carry me too, Neil.
Dawn: Yeah, now you have to tell me when SMA day is! Thanks.
Lene: Thanks, I can't write about what I don't know, but I can honor those who fight what I do know: how people sometimes treat each other.
Tammy: I am really, really glad that the post was positive for you. Tell me the next person to call you lazy and I will run them down.
I am glad that CFS and living life is possible, sorry for the stuggle but thank you for sharing - I think you (and anyone with CFS) deserves at least one day of applause.
Great post, Elizabeth. I remember when the term "yuppie flu" was coined, yet I never met any actual yuppies who have CFS. Surely there must have been some, but the people I have known with it have been working class to start with or downwardly mobile from middle class. It does seem that there is more understanding and consideration now, though it would be hard for there to have developed less!
Thank you for being an awesome ally. It's a lucky oppressed/ignored/misunderstood community that has Elizabeth and the power of her voice on their side.
It's funny that you mentioned sanitariums. For a while, before I knew what was going on with me, I had vague and unrealistic fantasies of being committed, just to have someone else cook my meals and to have absolutely nothing expected of me. After I figured out about having CFS, I switched to fantasies of the other kind of sanitarium, those elegant refuges for wealthy folks with tuberculosis, where a kindly nurse in a starched uniform wheels you out in your wicker bath chair onto the porch to take the air while you make desultory conversation with the other patients and sip lukewarm tea.
In the Soviet Union (which I know had a lot of not-so-great aspects) every person - intelligentsia, government, and working class alike - had a paid month or two a year at a place like this, with hot springs and mineral baths, or by the sea. If we had that here, maybe some of us wouldn't get to the point where we need it full-time.
Thanks again for a wonderful post.
Excellent post. My mom was diagnosed with CFS after not recovering from an illness.
I don't know. I don't even know how to find out.
May 12 is Fibromyalgia Awareness Day as well as CFS/ME (probably because the symptoms overlap so much).
Right now, I am really aware of my FM in that I am waaaaay too deep in Fibrofog to comment very clearly and that sucks 'cause there is so much I want to say. You don't speak "for" people with FM/CFS/ME, but you do speak about us with a lot of clarity and empathy. Thanks for that. You're an excellent ally, Elizabeth. You ask questions of yourself and look at your beliefs and really listen to the experiences of others. Thanks.
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