Going in the closet

[jenbooks]

I should revise a little.

People will ignore it if you just give it a name and don't bother them too much. If you can't do what you used to do, they will ignore you, too. If you can manage to be of some value to them, then they will just ignore the disease and not be too curious.

However, if you tell them the nitty gritty horrible truth of it, they will be offended, upset, irate, defensive. And they will tend to turn on you and blame you. This recently happened to me with an editor I've known for 25 years and it was very painful. He is blaming me for playing the victim and being "embedded in a story which serves you but not your health." He won't drop it either---I just got another email yesterday along with a PDF of an article I wrote that magazine is about to publish. In it he claimed he was surprised but not really, that I hadn't experimented with biophoton therapy yet. Because he believes I don't want to get well. (All the other therapies I'm doing don't count----and if I *did* do the biophoton therapy right away he'd have some other excuse to knock me over the head for holding onto a fake disease). It is horrible and so I've written him off and told him not to contact me again.

So a closeup of the truth usually elicits a kind of "defensive attack"--except from the most compassionate. People have seen this with their families too, from what I've read.

But a quick summary is usually accepted and then ignored. That's less painful, anyway.

Finally--regarding contagion. XMRV has not been confirmed as significant or causative yet so I would counsel people not to jump to the gun about that. And besides, we don't know what is contagious and what is not--sometimes people think lyme or some bug associated with it may be contagious. It's all very confusing. Until there is solid evidence of a contagious retrovirus that is causative, I wouldn't recommend blacklisting yourself...

 

[Robin]

we're here

I think if I were working and had a job on the line, I would definitely be in the closet.

But I can't work. I've been sick for almost 15 years and after a long time of fumbling with the "debilitating immune disease" or "neurological problems", I just don't care anymore and say I have chronic fatigue syndrome. There's nothing anyone can say that can hurt me anymore than CFS has hurt me.

So I guess I'm out of the closet. I write CFS/fibro on my dr.'s forms, even it's totally unrelated -- like I'm getting dental work done. It gives me a chance to tell people about it. My PCP is affiliated with a hospital and often has a resident on rotation. I always consent and then ask the resident if they know about CFS and tell them about myself. When I do so it's calm, rational, and I always make a point of how the severity of symptoms has affected my life.

More often than not, people are OK about it. I've only had one doctor be a dick about it. A lot of times people will say, "I know someone who has that!" and want to know more about it. Sometimes people are mean but it's usually not to my face. My boyfriend's mom thought I was a malingerer for a long time but wouldn't come out and say it.

I recently moved into my parents' in-law (I'm in a bedridden spell and need help) and found out that two of their neighbors are sick too. I was chatting with one neighbor's brother and he described this long round-about story about her not working, pain, exhaustion, and I'm thinking in my head "ding ding ding! CFS!" It's struck me as very sad that he couldn't just come out and say her diagnosis. And I totally understood why.

When I was 18 I went to a political rally. It was in the early 90s and AIDS was killing people left and right. Several AIDS activist groups were there, ACT-UP, BLGAD, and the parents of gay people one (I forgot the name.) There were signs, Tshirts, chanting of various slogans, including the ubiquitous "we're here, we're queer, get used to it."

Those of you that remember the news of AIDS in the early 80s will also recall how maligned the patients were. People would say that AIDS was God's revenge on gay people, horrible stuff like that. But during the next ten years there was such a rally on the part of the gay community through activism and unity. They refused the shame and went forward and got results.

I can't go testify in front of CFSAC or give much money for CFS. But, I guess being out of the closet is my little form of activism, my "we're here, we're queer". If someone I tell about CFS -- be it a professional or just a friend or neighbor -- learns a little bit and gains some sympathy, it can only be better for people with CFS. If I have to take a few blows along the way, so be it. I can handle it. ;-)

 

[CBS]

Re: We're Here!

Hi Robin,

Thanks for sharing your thoughts. I've been dealing with this for 16 years myself. I have been doing the immune-infection-neuro explanation. My reasoning is that most people understand what that means. I also chafe at the notion of giving credence to Bill Reeves and the CDC's efforts to marginalize us with a label they intentionally tried to make sound benign.

In the early years, I also was very skeptical about the utility of a CFS diagnosis. It was actually Dr. Jose Montoya who first wrote "likely variant of Chronic Fatigue Syndrome" in my record after he "could not reconcile lymph node morphology with serological findings - 7/10/94." Over time (and perhaps even at that time) the CFS label came to mean something quite specific to Dr. Montoya. For me, it meant that my internal medicine was finished with trying to find anything more.

There wasn't much offered in the way of specific treatment back then and I moved away to live with family as I could no longer work.

I attended a recent talk given by Dr. Lucinda Bateman on XMRV. She's talked with the WPI folks about the process of submitting the XMRV article to 'Science.' Apparently when the article was first submitted, the 'Science' editors insisted that remove all references to 'CFS.' The WPI folks stood their ground. I am so glad that they did so. The efforts to scrub the article clean of any reference to 'CFS' speaks volumes about how the medical community views 'CFS' (apparently 'Science' was afraid that publishing the article would diminish their credibility just as we have been viewed as less than credible). It also says that the XMRV article had to be rock solid.

I can't help but think that the meaning of 'CFS' is either going to become more consistent or CFS is going to be pitched into the dustbin of history as an assault on all of us.

I am conflicted about the 'CFS' label but I do respect your owning it. Maybe someday we'll all be attending rallies wearing t-shirts with the bio-hazard symbol and XAND in BOLD!