![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
flexibeastEarlier in the year i joined an ME/CFS e-list. Yesterday i decided to leave the list.
Living with CFS is difficult, and not only because of the illness itself, but because of all the issues surrounding it: society just not "getting it"; people assuming that one is just being lazy or indifferent and that one is merely lacking willpower; the medical profession not even agreeing on whether or not it's simply DSM-IV 'malingering', and if it's not, whether it's psychosomatic, and if it's not, what the actual aetiology of the illness is, and in fact, whether it's one illness, or a number of illnesses with similar characteristics, and in any case, is/are it/they new illnesses or old illnesses that have been under-investigated, and what treatments work and don't work, and to what degree?
It's all very tiresome - exhausting, for me - to have to deal with. And i came to feel that reading posts to the ME/CFS list actually exacerbated this, as the things mentioned above were discussed on the list in understandably frustrated and angry tones. i find it very tiring to continually deal with non-stop-aggro; and, really, i'm simply not that interested in my illness. i mean, i wish i didn't have it, and i wish it was 'officially' recognised, as it were, and i wish there was a definite cure available; but i do, it's not, and there isn't. For the first few years of my illness, i much more actively investigated possible causes and treatments, and subjected myself to batteries of tests which came up with nothing useful. But doing so was expensive in terms of time, energy, and financial resources - particularly given it produced no useful outcomes. (Well, it did, for example, disprove the theory that the problem was caused by me being vegan and my B12 levels consequently being too low; but that merely eliminated one of a multitude of possible causes, rather than revealing promising new directions for investigation.)
So nowadays i'm more focused on using my available time to try to live my life, instead of spending each waking moment thinking about my illness. i'm more interested in fighting against social injustice and fighting for human rights, particularly in the area of gender and sexuality; trying to develop myself spiritually; and playing around with mathematics and programming languages. And that was before i joined the e-list mentioned at the start of the article. Seeing posts to the list such as the one where a sufferer said that people using the phrase "CFS/ME" instead of "ME/CFS" were putting a metaphorical dagger through her heart (or some such) because the former supports one school of thought whereas the latter represents another school of thought1 merely consolidated my desire to not let my days be dominated by the politics of my illness. Further to that end, i'm no longer going to use the terms 'CFS' or 'ME', but simply "my Physical Conditions" or "the Physical Conditions".
If a consistenly reliable and effective treatment for my Physical Conditions become available, i'm sure i'll hear about it. In the meantime, i'm going to try to live my life.
1. Judean People's Liberation Front vs. the People's Liberation Front of Judea, anyone? :-/
Living with CFS is difficult, and not only because of the illness itself, but because of all the issues surrounding it: society just not "getting it"; people assuming that one is just being lazy or indifferent and that one is merely lacking willpower; the medical profession not even agreeing on whether or not it's simply DSM-IV 'malingering', and if it's not, whether it's psychosomatic, and if it's not, what the actual aetiology of the illness is, and in fact, whether it's one illness, or a number of illnesses with similar characteristics, and in any case, is/are it/they new illnesses or old illnesses that have been under-investigated, and what treatments work and don't work, and to what degree?
It's all very tiresome - exhausting, for me - to have to deal with. And i came to feel that reading posts to the ME/CFS list actually exacerbated this, as the things mentioned above were discussed on the list in understandably frustrated and angry tones. i find it very tiring to continually deal with non-stop-aggro; and, really, i'm simply not that interested in my illness. i mean, i wish i didn't have it, and i wish it was 'officially' recognised, as it were, and i wish there was a definite cure available; but i do, it's not, and there isn't. For the first few years of my illness, i much more actively investigated possible causes and treatments, and subjected myself to batteries of tests which came up with nothing useful. But doing so was expensive in terms of time, energy, and financial resources - particularly given it produced no useful outcomes. (Well, it did, for example, disprove the theory that the problem was caused by me being vegan and my B12 levels consequently being too low; but that merely eliminated one of a multitude of possible causes, rather than revealing promising new directions for investigation.)
So nowadays i'm more focused on using my available time to try to live my life, instead of spending each waking moment thinking about my illness. i'm more interested in fighting against social injustice and fighting for human rights, particularly in the area of gender and sexuality; trying to develop myself spiritually; and playing around with mathematics and programming languages. And that was before i joined the e-list mentioned at the start of the article. Seeing posts to the list such as the one where a sufferer said that people using the phrase "CFS/ME" instead of "ME/CFS" were putting a metaphorical dagger through her heart (or some such) because the former supports one school of thought whereas the latter represents another school of thought1 merely consolidated my desire to not let my days be dominated by the politics of my illness. Further to that end, i'm no longer going to use the terms 'CFS' or 'ME', but simply "my Physical Conditions" or "the Physical Conditions".
If a consistenly reliable and effective treatment for my Physical Conditions become available, i'm sure i'll hear about it. In the meantime, i'm going to try to live my life.
1. Judean People's Liberation Front vs. the People's Liberation Front of Judea, anyone? :-/
no subject
Date: 2006-02-10 05:28 (UTC)that's what i reckon anyway. balance is the key.
sounds to me like your decision to focus on some other areas of existence might help you heal. (or at least stop exacerbating the problems). which is stating the obvious isn't it. oops! just trying to acknowledge your decision but coming out all wrong. :(
no subject
Date: 2006-02-11 06:54 (UTC)Indeed! That's definitely what i try to focus on working towards, nowadays . . . .
Heh, no, it's okay, i got that - thanks. :-)
no subject
Date: 2006-02-10 05:31 (UTC)no subject
Date: 2006-02-11 06:07 (UTC)no subject
Date: 2006-02-10 06:19 (UTC)no subject
Date: 2006-02-11 06:08 (UTC)no subject
Date: 2006-02-10 11:49 (UTC)I salute your inner strength, and am very proud of your hard work!
Love ya lots and lots,
Your Sacred Harlot sweetie xxxxxxx.
no subject
Date: 2006-02-11 06:08 (UTC)no subject
Date: 2006-02-10 14:31 (UTC)no subject
Date: 2006-02-11 06:09 (UTC)