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#NEISVoid thoughts:
One thing I’ve learned to be mindful of in chronic illness spaces is that different people have different perceptions of the same diagnoses.
I know that, for many, fibro was another inaccurate, dismissive step on their journey to diagnosis. 1/
One thing I’ve learned to be mindful of in chronic illness spaces is that different people have different perceptions of the same diagnoses.
I know that, for many, fibro was another inaccurate, dismissive step on their journey to diagnosis. 1/
Whereas for me, being diagnosed with fibro was a godsend that completely changed my understanding of my body.
And I know that for many people IBS is a great, helpful diagnosis.
Whereas to me it’s the thing my doctor said I had as he refused all tests and missed a parasite. 2/
And I know that for many people IBS is a great, helpful diagnosis.
Whereas to me it’s the thing my doctor said I had as he refused all tests and missed a parasite. 2/
These experiences can, and do, coexist in chronic illness spaces. But I think we also need to find a balance between discussing our own experiences with CI & diagnosis journeys, and acknowledging that our experiences can’t invalidate other people’s. 3/
I’ve seen people without fibro use language like “just fibro” or “all in your head, like fibro.”
Similarly, I’ve been tempted to say “IBS is an umbrella term they give you when they can’t be bothered to actually figure it out.”
But neither one of those are wholly accurate. 4/
Similarly, I’ve been tempted to say “IBS is an umbrella term they give you when they can’t be bothered to actually figure it out.”
But neither one of those are wholly accurate. 4/
And both can hurt & alienate people with those diagnoses from chronic illness spaces.
This is especially important when talking about intersections with mental health. Many chronically ill people talk about how doctors dismissed our physical symptoms as psychological. 5/
This is especially important when talking about intersections with mental health. Many chronically ill people talk about how doctors dismissed our physical symptoms as psychological. 5/
And we SHOULD talk about that, it’s a problem. But I, for one, have done so in a way that dismissed mental illness. And I’m sure I’m not alone.
We need to be weary of using language that creates pseudo hierarchies in our spaces. 6/6
We need to be weary of using language that creates pseudo hierarchies in our spaces. 6/6
(Though maybe I just say that cause I sometimes feel like I’m near the bottom of those hierarchies with my fibro diagnosis. Who knows.)
