I do appreciate this. I often find it so challenging that the “safe” and “supportive” spaces for disabled folks can suddenly become toxic and harming as other folks gatekeep around whose experience is most valid or severe. I’ve found online support groups so valuable for resources they provide but more recently have been alarmed at how full of attack they can be. Especially because all of us have energy limiting illnesses, using energy to blame or shame others seems so bizarre to me. Of course as someone mostly bed-bound it can be hard to read about someone who feels sad about getting PEM from a challenging work day, travel for pleasure, or exercise outside. But, just because we don’t share the same experience of ME doesn’t mean that their experience isn’t extremely hard or is in some way invalid. I definitely don’t think we need to compete to be the sickest or the most disabled. Each of us is deeply and profoundly effected, our lives changed, shaped, challenged by our bodies.
I do appreciate this. I often find it so challenging that the “safe” and “supportive” spaces for disabled folks can suddenly become toxic and harming as other folks gatekeep around whose experience is most valid or severe. I’ve found online support groups so valuable for resources they provide but more recently have been alarmed at how full of attack they can be. Especially because all of us have energy limiting illnesses, using energy to blame or shame others seems so bizarre to me. Of course as someone mostly bed-bound it can be hard to read about someone who feels sad about getting PEM from a challenging work day, travel for pleasure, or exercise outside. But, just because we don’t share the same experience of ME doesn’t mean that their experience isn’t extremely hard or is in some way invalid. I definitely don’t think we need to compete to be the sickest or the most disabled. Each of us is deeply and profoundly effected, our lives changed, shaped, challenged by our bodies.
I so appreciate your comments, Natasha!