'Betwixt and between' Liminality in recovery stories from people with Myalgic Encephalitis

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Techs

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Dolphin said:
I think that having one foot in both camps is probably a reasonable way of continuing to exist rather than treating yourself as fully recovered and that ME/CFS is no longer relevant in your life.
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Yes, it seems to me that our disease, more than most other diseases, allows many of us to experience periods of relative health in which we may not signal any particular "illness behavior" (assuming we've been practicing "illness management"). For example, I am able to go to work a couple of hours most mornings, socializing fairly normally with my co-workers who have no real comprehension that I will, afterwards, have to spend much of the remaining day recovering.

I can understand why this type of research doesn't appeal to a lot of us. As a grad-school grad, I'm accustomed to jargon, and I find it kind of interesting on a meta level (ha). Habermas believes "the self" is a collaborative creation by an individual and the society she interacts with. I.e., society is our mirror. Since society "gets," say, cancer, or diabetes, people with those diseases likely receive clearer reflections (in the form of empathy, discussion, insights, etc). So, those "selves" might feel more solid and well-formed (less liminal).

But, on top of that, we experience additional blurriness in our own community, not only because our relationship is largely online, but because many of us with very similar symptoms and challenges might actually have had very different etiologies, triggers and responses to treatments. So that can multiply the fun-house effect.

Anyway, Dolphin, I thought you shared some great insights. The ability to work/study full-time seems a useful demarcation, not only for perceiving our own lives, but for "civilians" who think they understand what we're going through because they get pooped out easily too!
 
dannybex

dannybex

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Jenny TipsforME said:
What is probably different about me from these participants is I didn't get involved in the ME community in the initial phase. Groups seemed depressing, this forum didn't exist and neither did Twitter. I didn't then have the feeling of not fitting in anymore as I was doing better, but I did have the feeling of not being the same as well people.
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With apologies to PR and other forums, that fits in with the conclusion of this study:

"This cross-sectional study suggests that support groups for CFS are viewed as helpful by participants on a number of illness related issues. On the other hand, active members reported greater symptom severity and less illness improvement than inactive members or dropouts."
 
BruceInOz

BruceInOz

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dannybex said:
With apologies to PR and other forums, that fits in with the conclusion of this study:

"This cross-sectional study suggests that support groups for CFS are viewed as helpful by participants on a number of illness related issues. On the other hand, active members reported greater symptom severity and less illness improvement than inactive members or dropouts."
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Didn't read more than the abstract but the bold part here is just more correlation = causation bullshit.
 
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daisybell

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Surely it's to be expected that those who participate for longer periods in online support groups are likely to be moderate-severely affected? I'm on here more when I feel less good because i can't be spending time doing other things which take more energy. Even reading a book can be too much but browsing the forum is ok. People who are really severe probably aren't here much if at all. People who are mildly affected have more choice about activities...
 
dannybex

dannybex

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BruceInOz said:
Didn't read more than the abstract but the bold part here is just more correlation = causation bullshit.
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Well, I can't say if it's true across all spectrums or not, but of the people I know who have recovered anywhere from 70-100% -- and that's about seven or eight people -- I'd say only 2 were active on a daily basis on forums over the years. That doesn't prove much I know, but just food for thought.
 
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AndyPR

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Well my personal experience is that when my ME was on the milder side I didn't have the time or energy to be on forums, all my resources were used up in trying to maintain a "normal" life. As I slowly became worse I had to scale everything back and that was when I started to engage with the patient community online. It took going from working mild to mostly homebound moderate for me to sign up to PR. So my opinion is that its obvious more severely affected patients are going to be members of an online community, and to seek to blame membership of such a community for continued health issues is absolute bollocks.
 
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RogerBlack

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AndyPR said:
As I slowly became worse I had to scale everything back and that was when I started to engage with the patient community online.
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A similar story here.
I got ME/CFS/SEID/yuppie flu/'you're just being lazy aren't you' when I was 12, and sort of struggled with individual tuition through high-school, and managed to sort-of attend university - not having energy for any of the social parts - for a decade until I eventually crashed out a few semesters in.
I then tried to continue education and preparation for employment for the next decade and a bit, perhaps to the exclusion of any attempt at socialisation 'when I'm better, and in work'.
Latterly, when my mother died I took on too much, and crashed. Not helped by the stresses of applying for benefits and multiple layers of appeals. Engaging in the patient community in many ways I was avoiding, as it was an admission of failure.

I am not a sick person. I am a temporarily out of work electrical/mechanical engineer with a somewhat light CV.
Or, perhaps, not.
Accepting the fact that CFS has destroyed my life is something I can't cope very well with.
 
free at last

free at last

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A good long term remission can feel like recovery. But its not total. But if the illness was initially quite strong. And lasted for a long period, then that type of improvement can feel like a cure in comparison. But again I don't think it is,
in most cased. But it can be profound. Especially in comparison

I wonder about the mental impact of a illness like this, I don't think the mind always recovers quite as well, as what the body is possible to achieve. I also think there is a huge variance in symptoms in members on any CFS.ME forum
Time and possibly some unknown factors influence this. Some are not in the living hell that the first 5 years can inflict, on a person. Hence the improvement. But may well have been extremely unwell for long periods. Misdiagnosis must play a part in some stories too. The true recoveries have not been misdiagnosed. Or fully recovered. But recovery is profound enough to feel free again. I think I know a bit about this as I have lived it. Looking back I have learned a lot
 
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