When I blog about the CFS stuff or the difficulties surrounding it, I am not looking for sympathy and I am really not expecting advice.
Sometimes things just feel overwhelming and unreal and I just want to express about it. It is just part of my experience.
In my offline life, some people at first want to react with lots of sympathy, which feel uncomfortable. I don't want sympathy, I want understanding and acceptance to be as I am without feeling like I am freakish, but that doesn't seem possible.
Some people react with judgement or assuption that I have what their aunt berle has and they stop listening at that point, satified that they've got me in the right box. The thing that is hurtful about that is, a whole boat load of assumptions are made along with that, including all the emotional baggage they had with how aunt berle handled her situation, whether she was justified in how she handled it or not, often even their understanding of their aunt berle's situation was likely incomplete as well, and then I get second hand assuptions on top of assuptions. No chance of understanding from these people at all!
Then some people either get into "I can fix you!" mode or they get compassion fatigue, because they misunderstood and thought I was seeking endless sympathizing or they settle into being inquistors, quizzing me every time they see me and never bothering to remember the details yet same probing, endless questions each time they see me.(this last tends to be people who have deeper fear issues with illness in general) I tend to avoid all three and run the other direction.
If I blog here, I am trying to either just express my life as it is really is or I am trying to seek clarity for myself, something makes it more real if others read it.
I don't tend to go to the support groups because they so often seem to be such conformist, lockstep places, with so much backchannel politics and group dynamics is becomes disgusting. I hated that stuff at work and in the family, why would I seek it out in my online life?
Sometimes things just feel overwhelming and unreal and I just want to express about it. It is just part of my experience.
In my offline life, some people at first want to react with lots of sympathy, which feel uncomfortable. I don't want sympathy, I want understanding and acceptance to be as I am without feeling like I am freakish, but that doesn't seem possible.
Some people react with judgement or assuption that I have what their aunt berle has and they stop listening at that point, satified that they've got me in the right box. The thing that is hurtful about that is, a whole boat load of assumptions are made along with that, including all the emotional baggage they had with how aunt berle handled her situation, whether she was justified in how she handled it or not, often even their understanding of their aunt berle's situation was likely incomplete as well, and then I get second hand assuptions on top of assuptions. No chance of understanding from these people at all!
Then some people either get into "I can fix you!" mode or they get compassion fatigue, because they misunderstood and thought I was seeking endless sympathizing or they settle into being inquistors, quizzing me every time they see me and never bothering to remember the details yet same probing, endless questions each time they see me.(this last tends to be people who have deeper fear issues with illness in general) I tend to avoid all three and run the other direction.
If I blog here, I am trying to either just express my life as it is really is or I am trying to seek clarity for myself, something makes it more real if others read it.
I don't tend to go to the support groups because they so often seem to be such conformist, lockstep places, with so much backchannel politics and group dynamics is becomes disgusting. I hated that stuff at work and in the family, why would I seek it out in my online life?
