I Am Very Angry
I am dealing with a lot of anger lately, and its contributing to my stress and depression.
Finding out that eating gluten was the problem was actually a relief, because it meant there was something concrete I could do to improve my health. So I am not actually angry about having Celiac disease. I am also not angry about not being able to eat gluten. That's actually not a big deal to me. It is very inconvenient, and sometimes I feel frustrated or wistful or annoyed, but I'm not angry about eating GF. Eating GF helps me a lot, so I am actually happy about it.
What I am angry about is the way that so many doctors failed me. I am angry that I was misdiagnosed over and over and over. I am angry that none of the many, many specialists I saw nver looked deeper to find out the cause of my many disease states.
For example, the neurologist who diagnosed my peripheral neuropathy: he didn't try to find out WHY I have it, or suggest another doctor to find out why. He just said "We don't really know wny non-diabetics get it. A lot of people with hypothyroid disease have it, and with some people it's just genetic." Did he happen to mention Celiac disease and its frequent comorbidity with hypothyroid? No. Same with my recent endo/GYN: I asked him directly if he knew anything about gluten consumption increasing anti-thyroid antibodies, and he dismissed the idea, saying it was just hype and that people with thyroid disease were mistaking IR for a gluten problem. But there is documented research showing that a)people with AI thyroid disease should be tested for Celiac disease and b) Celiac disease, when combined with AI thyroid disease, raises anti-thyroid antibodies.
I am angry because I could have been well a decade ago if someone had really looked into the autoimmunity thing. I am angry because I have suffered so very much, and my health is not and might never be 100%. I am angry because my body is damaged and I have not been able to have a full life. I am angry angry angry.
I saw so many specialists who were dismissive and rude and fat-shamey and disrespectful and didn't help me at all. And their misdiagnoses, in addition to destroying my health, cost me my disability case and furthered my years of poverty and struggle and sickness.
WHen I was very young, I was one of those people who was not entirely, but kind of of, opposed to conventional medicine. I was all into natural remedies and mental fortitude. But those things failed me, so I turned to conventional medicine. But conventional medicine, too, failed me. It did. So now where do I turn?
The problem, I am sad to say, is that most doctors are not practicing evidence-based medicine. They are practicing bias-based medicine.
I am considering going back to my old therapist but honestly even that feels overwhelming. Finding new doctors feels overwhelming. Doing all the bone scans and colonoscopy and other stuff I need to do is overwhelmnig. Getting out of bed in the morning is overwhelming.
People don't realize this, but living with chronic autoimmune disease is a full time job. Just taking care of myself right now is a full time job, one I have to do with only half the energy of an able-bodied person.
Finding out that eating gluten was the problem was actually a relief, because it meant there was something concrete I could do to improve my health. So I am not actually angry about having Celiac disease. I am also not angry about not being able to eat gluten. That's actually not a big deal to me. It is very inconvenient, and sometimes I feel frustrated or wistful or annoyed, but I'm not angry about eating GF. Eating GF helps me a lot, so I am actually happy about it.
What I am angry about is the way that so many doctors failed me. I am angry that I was misdiagnosed over and over and over. I am angry that none of the many, many specialists I saw nver looked deeper to find out the cause of my many disease states.
For example, the neurologist who diagnosed my peripheral neuropathy: he didn't try to find out WHY I have it, or suggest another doctor to find out why. He just said "We don't really know wny non-diabetics get it. A lot of people with hypothyroid disease have it, and with some people it's just genetic." Did he happen to mention Celiac disease and its frequent comorbidity with hypothyroid? No. Same with my recent endo/GYN: I asked him directly if he knew anything about gluten consumption increasing anti-thyroid antibodies, and he dismissed the idea, saying it was just hype and that people with thyroid disease were mistaking IR for a gluten problem. But there is documented research showing that a)people with AI thyroid disease should be tested for Celiac disease and b) Celiac disease, when combined with AI thyroid disease, raises anti-thyroid antibodies.
I am angry because I could have been well a decade ago if someone had really looked into the autoimmunity thing. I am angry because I have suffered so very much, and my health is not and might never be 100%. I am angry because my body is damaged and I have not been able to have a full life. I am angry angry angry.
I saw so many specialists who were dismissive and rude and fat-shamey and disrespectful and didn't help me at all. And their misdiagnoses, in addition to destroying my health, cost me my disability case and furthered my years of poverty and struggle and sickness.
WHen I was very young, I was one of those people who was not entirely, but kind of of, opposed to conventional medicine. I was all into natural remedies and mental fortitude. But those things failed me, so I turned to conventional medicine. But conventional medicine, too, failed me. It did. So now where do I turn?
The problem, I am sad to say, is that most doctors are not practicing evidence-based medicine. They are practicing bias-based medicine.
I am considering going back to my old therapist but honestly even that feels overwhelming. Finding new doctors feels overwhelming. Doing all the bone scans and colonoscopy and other stuff I need to do is overwhelmnig. Getting out of bed in the morning is overwhelming.
People don't realize this, but living with chronic autoimmune disease is a full time job. Just taking care of myself right now is a full time job, one I have to do with only half the energy of an able-bodied person.