Online > http://www.guardian.co.uk/lifeandstyle/2011/mar/12/what-really-thinking-woman-with-me
Twenty years coping with the symptoms of ME is bad enough, but 20 years of coping with people's eactions to it adds insult to injury in the most literal sense.
First was the era of "yuppie flu", when people you'd never met before felt entitled to interrogate you as to the validity of your illness and your presumed psychological deficiencies. Nowadays I get either the "you need to pull yourself together" brigade, or the
alternative types who ask what my illness means, and are sure I could be well if only I understood what it was trying to tell me. Well, if I haven't figured that out in 20 years, that must mean they think I'm pretty thick. Then there are the ones who say, "But you always look so well." Of course I look well when I'm out and about; it's because that's a day when I'm well enough to drive. They should see me on the other days.
Of course, this is largely about the rudely healthy being in denial of the reality of illness. Yes, it's scary to think you could wake up with a cold one day and never be well again, and there's little you can do about it. But don't try to force me to collude with you in trying to deny that it happens.
What I mind most, though, are the people who listen to my story with such sympathy, but then take equal time to describe the horrors of their current cold/flu/chilblains. My usual response? "Don't worry too much about feeling ill, it gets easier after the first couple of years." That shuts them up.
2011 Guardian News and Media Limited.
---------------------------------
This is one in a series called "What I'm really thinking", published on a Saturday, every week in the Guardian Newspaper in the UK.
They invite people to contribute, in time for publication, next Saturday (19 March 2011).
e-mail - weekend@guardian.co.uk
For inclusion next Saturday, letters by post should reach them by first post on Tuesday and may be edited.
This is my reply
Re: What I'm really thinking: The woman with ME, Guardian, 12 March 2011
We may never have known about Laura Hillenbrand at all, or that she is a very severely affected sufferer of M.E. (Myalgic Encephalomyelitis) but for her success as a writer, firstly, of "Seabiscuit", the novel behind the film about the true story of an undersized racehorse with an awkward gait, whose unexpected victories raised the spirits of a nation during the Great Depression and now, "Unbroken", about the life of athlete and war hero, Louis Zamperini.
In a recent Question and Answer interview (An author escapes from Chronic Fatigue Syndrome, New York Times, 4 February 2011 http://well.blogs.nytimes.com/2011/02/04/an-author-escapes-from-chronic-fatigue-syndrome/ - Short link - http://tinyurl.com/4nlp57j), Laura has taken the opportunity to increase knowledge and raise public awareness of this dreadfully disabling illness, with personal experience, which may otherwise have remained within the four walls of her bedroom and of those who have not been able to reach outside them in the way her extraordinary success has allowed.
There is only one point on which she and I significantly differ: Laura, now 43, who has been sick for 24 years since the age of 19, says that she doesn't remember what it is like to feel well. I am 57, have been ill for 23 years but, even after all this time, I can vividly remember what it is like to be healthy, go to work every day, have a full social life and the fair share that everyone deserves, as though it were only yesterday. And I want it (or at least some of it) back - for me and everyone else who has been similarly robbed.
Everyone, of whatever age they were when this awful illness hit them, has lost - or has had stolen from them - a huge chunk of their life, whether childhood, teenage years, career, or sometime the retirement they had earned. With the support of fellow sufferers, like Laura Hillenbrand and some smart academics, I intend to try to stop this thief and perhaps restore some of his ill-gotten gains.
Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All.org
----------------------------
Remember they are inviting people to send in their contributions.
Let's not disappoint them. Please make an extra effort to make that Letters Editor's desk creak under the weight of what we are really thinking.
Please don't leave it to others and then regret that you lost the opportunity.
This is a National newspaper in the UK. M.E. doesn't recognise any borders, so I hope that sufferers of this awful illness from all over the World will tell us all what they are really thinking too.
e-mails to weekend@guardian.co.uk
Best wishes
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All.org
Twenty years coping with the symptoms of ME is bad enough, but 20 years of coping with people's eactions to it adds insult to injury in the most literal sense.
First was the era of "yuppie flu", when people you'd never met before felt entitled to interrogate you as to the validity of your illness and your presumed psychological deficiencies. Nowadays I get either the "you need to pull yourself together" brigade, or the
alternative types who ask what my illness means, and are sure I could be well if only I understood what it was trying to tell me. Well, if I haven't figured that out in 20 years, that must mean they think I'm pretty thick. Then there are the ones who say, "But you always look so well." Of course I look well when I'm out and about; it's because that's a day when I'm well enough to drive. They should see me on the other days.
Of course, this is largely about the rudely healthy being in denial of the reality of illness. Yes, it's scary to think you could wake up with a cold one day and never be well again, and there's little you can do about it. But don't try to force me to collude with you in trying to deny that it happens.
What I mind most, though, are the people who listen to my story with such sympathy, but then take equal time to describe the horrors of their current cold/flu/chilblains. My usual response? "Don't worry too much about feeling ill, it gets easier after the first couple of years." That shuts them up.
2011 Guardian News and Media Limited.
---------------------------------
This is one in a series called "What I'm really thinking", published on a Saturday, every week in the Guardian Newspaper in the UK.
They invite people to contribute, in time for publication, next Saturday (19 March 2011).
e-mail - weekend@guardian.co.uk
For inclusion next Saturday, letters by post should reach them by first post on Tuesday and may be edited.
This is my reply
Re: What I'm really thinking: The woman with ME, Guardian, 12 March 2011
We may never have known about Laura Hillenbrand at all, or that she is a very severely affected sufferer of M.E. (Myalgic Encephalomyelitis) but for her success as a writer, firstly, of "Seabiscuit", the novel behind the film about the true story of an undersized racehorse with an awkward gait, whose unexpected victories raised the spirits of a nation during the Great Depression and now, "Unbroken", about the life of athlete and war hero, Louis Zamperini.
In a recent Question and Answer interview (An author escapes from Chronic Fatigue Syndrome, New York Times, 4 February 2011 http://well.blogs.nytimes.com/2011/02/04/an-author-escapes-from-chronic-fatigue-syndrome/ - Short link - http://tinyurl.com/4nlp57j), Laura has taken the opportunity to increase knowledge and raise public awareness of this dreadfully disabling illness, with personal experience, which may otherwise have remained within the four walls of her bedroom and of those who have not been able to reach outside them in the way her extraordinary success has allowed.
There is only one point on which she and I significantly differ: Laura, now 43, who has been sick for 24 years since the age of 19, says that she doesn't remember what it is like to feel well. I am 57, have been ill for 23 years but, even after all this time, I can vividly remember what it is like to be healthy, go to work every day, have a full social life and the fair share that everyone deserves, as though it were only yesterday. And I want it (or at least some of it) back - for me and everyone else who has been similarly robbed.
Everyone, of whatever age they were when this awful illness hit them, has lost - or has had stolen from them - a huge chunk of their life, whether childhood, teenage years, career, or sometime the retirement they had earned. With the support of fellow sufferers, like Laura Hillenbrand and some smart academics, I intend to try to stop this thief and perhaps restore some of his ill-gotten gains.
Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All.org
----------------------------
Remember they are inviting people to send in their contributions.
Let's not disappoint them. Please make an extra effort to make that Letters Editor's desk creak under the weight of what we are really thinking.
Please don't leave it to others and then regret that you lost the opportunity.
This is a National newspaper in the UK. M.E. doesn't recognise any borders, so I hope that sufferers of this awful illness from all over the World will tell us all what they are really thinking too.
e-mails to weekend@guardian.co.uk
Best wishes
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All.org
