Some people don't have a clue. I have something called Charcot Foot along with bad neuropathy. It won't get better, only worse. I walk like a toddler. Most people ignore it and won't ask what's wrong. I like when they ask better than ignoring it. I hate not walking normally, but I'm grateful I can walk because it can change in a second.
I've sometimes found myself thinking that if I had cancer, at least I would actually know what it was, and treatment options more clear. Having a chronic illness that no one seems to be able to pinpoint and therefore know exactly how to treat is terrifying in its own way. Comparison is never the answer.
You’re not alone although I know it can feel that way. I’ve been living with chronic pain, fatigue and life long spontaneous joint dislocations from Ehlers Danlos Syndrome hypermobile type. My geneticist said that to me “it’s not cancer...” so no one is spending any money on finding answers even though it can kill you. So I’m now at the end of my 66 years on the planet because defective collagen has evolved into spontaneous kidney failure. I’ve been left behind by family and friends who don’t understand chronic illness because “you look great” People think they’re helping by saying that but they don’t realize they are invalidating everything your going through, especially the never ending intractable pain no one can see.
Anyway, my thoughts are with you and thank you for sharing your story with us. 🙏🏻
I have 5 autoimmune diseases. I sometimes feel that with cancer, there’s a resolution: remission or death. Autoimmunity is the slow, painful destruction of you while life whizzes by.
“At Least it’s not cancer”
Some people don't have a clue. I have something called Charcot Foot along with bad neuropathy. It won't get better, only worse. I walk like a toddler. Most people ignore it and won't ask what's wrong. I like when they ask better than ignoring it. I hate not walking normally, but I'm grateful I can walk because it can change in a second.
I've sometimes found myself thinking that if I had cancer, at least I would actually know what it was, and treatment options more clear. Having a chronic illness that no one seems to be able to pinpoint and therefore know exactly how to treat is terrifying in its own way. Comparison is never the answer.
You’re not alone although I know it can feel that way. I’ve been living with chronic pain, fatigue and life long spontaneous joint dislocations from Ehlers Danlos Syndrome hypermobile type. My geneticist said that to me “it’s not cancer...” so no one is spending any money on finding answers even though it can kill you. So I’m now at the end of my 66 years on the planet because defective collagen has evolved into spontaneous kidney failure. I’ve been left behind by family and friends who don’t understand chronic illness because “you look great” People think they’re helping by saying that but they don’t realize they are invalidating everything your going through, especially the never ending intractable pain no one can see.
Anyway, my thoughts are with you and thank you for sharing your story with us. 🙏🏻
Lovely. Thank you for this.
I have 5 autoimmune diseases. I sometimes feel that with cancer, there’s a resolution: remission or death. Autoimmunity is the slow, painful destruction of you while life whizzes by.
Thank you, Jayne, for your ever touching, resonating, relatable words. They mean a lot and always makes me feel less alone with my body grief.