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 see you. Thank you for seeing me. We are not alone, even when it feels so lonely. Thank you so much for sharing your story! I am honored to know a bit about your Body Grief.
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.
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.
So true. I have a genetic disorder that is basically defective collagen genes. Collagen is in every cell in our bodies. It’s what hold us together and mine is defective. At this stage in my journey through life, I have 4 autoimmune disorders besides the genetic disorder and now in kidney failure, that makes a total of 27 different medical conditions on my medical chart. Some have maintenance medications but most don’t. None of them are cancer, none have a cure, most are chronic diseases that are horribly painful and the latest one (kidney failure) is killing me--yet all are “hidden illnesses” and to people who don’t know me, and sadly even some that do, think I’m faking it for attention. I find that both annoying and sometimes a little funny because who would continue for 60+ years to pretend to have so many conditions that yet I “look fine” therefore I must be faking it. Amazing that unless your chronic condition is cancer--both laypeople and doctors can’t be bothered to learn about it if it’s not the “C” word.
It’s now June 2024. Since I last posted anything my life has changed yet again, drastically. My eldest daughter took her life in early January. I’ve moved away from where we lived because I can’t deal with the sad memories. I can feel my body failing me faster. I’ve fallen several times since her death. I can feel my body and my desire to continue at 67 with all the chronic pain I’m in waning. It’s hard enough dealing with chronic illness and pain. When my daughter took her life, she took part of me with her. So a month ago I moved to a serene place near a lake in the forest. I hope it’s the last place I ever live. I have a year lease and no promise it will be renewed if I’m still alive by this time next year. I’m still not able to speak to a grief counselor. I don’t know that I will ever be. I just cling to my faith and pray in the mercy of God that we will one day be forever in His light and love.
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 see you. Thank you for seeing me. We are not alone, even when it feels so lonely. Thank you so much for sharing your story! I am honored to know a bit about your Body Grief.
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.
Lovely. Thank you for this.
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.
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.
So true. I have a genetic disorder that is basically defective collagen genes. Collagen is in every cell in our bodies. It’s what hold us together and mine is defective. At this stage in my journey through life, I have 4 autoimmune disorders besides the genetic disorder and now in kidney failure, that makes a total of 27 different medical conditions on my medical chart. Some have maintenance medications but most don’t. None of them are cancer, none have a cure, most are chronic diseases that are horribly painful and the latest one (kidney failure) is killing me--yet all are “hidden illnesses” and to people who don’t know me, and sadly even some that do, think I’m faking it for attention. I find that both annoying and sometimes a little funny because who would continue for 60+ years to pretend to have so many conditions that yet I “look fine” therefore I must be faking it. Amazing that unless your chronic condition is cancer--both laypeople and doctors can’t be bothered to learn about it if it’s not the “C” word.
You’re not alone. I completely understand 🫶🏻
Sending you love. No one would or could fake this stuff
Gentle hugs to you. 🫶🏻
It’s now June 2024. Since I last posted anything my life has changed yet again, drastically. My eldest daughter took her life in early January. I’ve moved away from where we lived because I can’t deal with the sad memories. I can feel my body failing me faster. I’ve fallen several times since her death. I can feel my body and my desire to continue at 67 with all the chronic pain I’m in waning. It’s hard enough dealing with chronic illness and pain. When my daughter took her life, she took part of me with her. So a month ago I moved to a serene place near a lake in the forest. I hope it’s the last place I ever live. I have a year lease and no promise it will be renewed if I’m still alive by this time next year. I’m still not able to speak to a grief counselor. I don’t know that I will ever be. I just cling to my faith and pray in the mercy of God that we will one day be forever in His light and love.
Truly. it can be so so lonely. I see you and hear you. you are not alone.