Provocative ME/Sex Article (Washington Post)

[Old Bones]

Just the kind of press we need:

"Yes, I’m disabled, but I still love sex. I just wish I had started having it sooner

If I had known I’d get hit with a disabling neuroimmune illness when I was 24, I wouldn’t have waited until I was 20 to lose my virginity. . . .

I’m 49 now and have had myalgic encephalomyelitis, or ME - often inaptly called chronic fatigue syndrome - for more than half my life."

Read more here: http://www.islandpacket.com/opinion/article108736512.html

Imagine the good that could be done by devoting this much news coverage to worthwhile issues associated with ME such as promising research, abandonment by the government/health care systems, etc. It seems ME is still a wink/nudge joke in the minds of some editors.

 

[worldbackwards]

I don't see the problem. This is a disability stigma issue - the disabled are seen as somehow less than human, not having the kind of drives and needs that other people have. That the disabled would want to talk about sex doesn't seem to me to be salacious or prurient, more that they, that we, would want to be seen as normal human beings.

And that someone with ME has been chosen to represent the disabled as a whole here seems to me to be a step forward, that our illness is seen to be as severe as others with higher profiles and worthy of coverage as a disability in itself, rather than the he said/she said slanging match/freak show that it tends to boil down to.

If I didn't know better I might think you were a bit of a prude.

 

[AndyPR]

Honestly, I don't think it's that bad an article. There are many ways to get our story across and, to me, this seemed like quite an adult discussion about sex and how it is affected by an illness. There will be some people who will read this because it talks about sex but who wouldn't read an article that talks solely about the science and/or politics.

 

[*GG*]

Just the kind of press we need:

"Yes, I’m disabled, but I still love sex. I just wish I had started having it sooner

If I had known I’d get hit with a disabling neuroimmune illness when I was 24, I wouldn’t have waited until I was 20 to lose my virginity. . . .

I’m 49 now and have had myalgic encephalomyelitis, or ME - often inaptly called chronic fatigue syndrome - for more than half my life."

Read more here: http://www.islandpacket.com/opinion/article108736512.html

Imagine the good that could be done by devoting this much news coverage to worthwhile issues associated with ME such as promising research, abandonment by the government/health care systems, etc. It seems ME is still a wink/nudge joke in the minds of some editors.

Its the Washington Post, I have no delusions that they would be Fair. They don't want to hold Gov't accountable, they are all for more dysfunction!

GG

 

[Old Bones]

If I didn't know better I might think you were a bit of a prude.

No, I am not a prude. But . . . whenever I do an internet search for the latest news about ME, I try to place myself in the mind of someone unfamiliar with the illness who is investigating it for the first time. And, I also consider that many people who have no personal connection to an issue don't read much beyond the headline and the first paragraph or two. These are the reasons I wasn't particularly happy with the provocative way the article was presented. Of course, without the headline, some readers may not have been attracted to it at all.

I agree with you, @AndyPR , it's not a bad article. But, I am left wondering if similar articles are published for illnesses the broader population are aware of, and believe to be genuine physiological conditions (eg. cancer, heart disease, MS). I don't know, of course, because I'm not looking for them.

 

[Denise]

FWIW - articles about disability and sex do appear - in fact The Guardian had this article in the past couple of days

Disability and sex are not mutually exclusive

"Like many young women, Emily Yates has tattoos, tinted hair, a love of fashion and a great sex life. She also happens to have cerebral palsy...."


and this one appeared a couple of months ago (again in The Guardian)

Let's take the initiative to start a sexual revolution for people with disabilities

"We need to push the boundaries and create new role models to push the barriers of acceptance and normality around disability and sex...."

 

[hellytheelephant]

How can anyone with ME stay 'surprisingly fit'?? I genuinely don't understand how that can be possible.

There is no mention of symptoms or agonising pain- Or PEM
If I didn't know anything about ME and read this I would assume it is difficult but not impossible to have a good quality of life with this illness.
That as we know, is far from the truth.

I can't find the energy to shower, so sex, although high on my wish list, is some way down on my 'to do' list.




.

 

[trishrhymes]

I think it's a really good article, both the stuff about sex and disability in general, and the fact that she manages to get in lots of good info about ME. Though she does seem to be pretty high functioning, she does also point out that lots of us are house/bed bound.

 

[viggster]

How can anyone with ME stay 'surprisingly fit'?? I genuinely don't understand how that can be possible.

There is no mention of symptoms or agonising pain- Or PEM
If I didn't know anything about ME and read this I would assume it is difficult but not impossible to have a good quality of life with this illness.
That as we know, is far from the truth.

I can't find the energy to shower, so sex, although high on my wish list, is some way down on my 'to do' list.

.

Well, she wrote that she has had stretches where she has had to rely on a wheelchair, and she mentions that many patients are bedbound and that she's grateful to be so (relatively) high functioning. That seems like a well-rounded view.

 

[Old Bones]

If I didn't know anything about ME and read this I would assume it is difficult but not impossible to have a good quality of life with this illness.

In addition, there's the common mindset that if we can do "X" (where "X" can be just about anything), we can't be as ill as we claim to be. A few years ago, a friend saw a photo taken of me on one of our rare vacations. I was wearing a pair of walking shoes. Her immediate reaction was: "See, you can hike". What she didn't know . . . the photo was taken 100 meters from the car, and I felt close to collapse. I can imagine what she would have thought (and hopefully not said) if she believed I was having the "great sex" described in the article.

 

[J.G]

An article primarily about ME is read primarily by ME-patients.
An article primarily about sex is read primarily by, well, anyone.

We need to spread our message among the general public, and sometimes the dissemination of opinion/information works best when it is presented indirectly. This article accurately describes ME as a neuro-immune illness. I'm happy with it.

 

[justy]

I think its a good article. It begins with a very good summary of ME and how it affects people, and the good work being done to find a cure right now. The writer also talks about disability issues in general, which I agree is great that someone with ME is being used as a general spokesperson for disabled people. I see nothing worng with it, other than the slightly sensationalist headline.

 

[frog_in_the_fog]

Sex for a person with ME can be painful, debilitating, disorienting, overwhelming, and for some just plain impossible. The most I can muster on a good day is a good long cuddle session with my favorite body pillow. You might think this is sad, but it is absolutely practical.

 

[SilverbladeTE]

#1 sex sells, so it's a good way to "normalize" how ME should be seen by the Public

#2 sex (and love) are enormous parts of our lives, and mine has been totally ruined by this monstrous illness.
As a very passionate person, in both senses of the word, that really *hurts*
Beyond the obvious effects of an illness/disability, the suffering and loss they can incur on the Human being inside can have very horrible consequences.

#3 the media over all, are pushed to support the propaganda of the scumbags in power (Neoliberals or whatever you'/d like ot call them), who want disability to "go away" as it costs the Elite tax money
so they keep pushing this idea that disabled folk all lead wonderful lives!
Disabilities vary enormously between types and effects on individuals, and even a ParaOlimpyian may cry in pain and loss at times

 

[ghosalb]

disability means freeloading to many people....and then add having sex, they got their confirmation....too fatigued to work but....

 

[erin]

@SilverbladeTE and @ghosalb thank you for spot on comments.

 

[frog_in_the_fog]

disability means freeloading to many people....and then add having sex, they got their confirmation....too fatigued to work but....

Yes indeed, we have life fulfilling sex all day long. NOT!!!

In Japan they take sexual health very seriously, the government pays for licensed practitioners to assist with severely disabled patient needs. The website VICE ran a few stories on the subject, which drew negative attention to the service.

 

[Old Bones]

Yes indeed, we have life fulfilling sex all day long. NOT!!!

I concur. Take a look at the results for Cort Johnson's Sex Poll on Health Rising. They certainly match my experience with sex post-ME much more accurately than that portrayed in the news article.

A few examples:
Reduced frequency since becoming ill - 92 percent
Reduced desire/arousal - 77 percent
Illness has had a great impact on sex life - 77 percent

http://www.healthrising.org/forums/...-syndrome-and-fibromyalgia-the-sex-poll.3391/