Dysautonomia
This is the post where I explain the invisible disease that I have.
About five of you have encouraged me to post about this, so here goes.
I was diagnosed with Autonomic Neuropathy when I was just turned 15. The next few years were traumatic, but there was one aspect of my diagnosis that gave me hope for the future. Even when I had to lie in bed all day because my blood pressure was so low and I might stop breathing and all the other ways I could have died but didn't, my doctor told me that I would get better. And I did, eventually. I continued to suffer from what I considered "chronic issues," allergies, asthma, fatigue and a particular susceptibility to whatever virus was going around, which I understood to be remainders of the trauma my body had survived that would eventually pass as I got older and stronger.
For four years after high school I enjoyed what I considered to be peak health until suddenly a year and a half ago I got very sick. No one knew why. The doctors said it was stress, and it was, but not the kind that they meant. My Autonomic Neuropathy had come back, only this time it took me over a year to recognize it.
Autonomic Neuropathy (AN), also known as Dysautonomia is a malfunction of the Autonomic Nervous system. In short, it is the system responsible for everything your body does automatically, for example: your heart rate, digestion, breathing, blood pressure, pulse, body temperature, sweating, bowel function, sleep patterns, etc.
It is highly individualized and treatment can only be to manage the symptoms. Many people with AN have it with a more well known disease, such as diabetes. I am one of the rare people who only have AN. Because it is so rare most doctors haven't heard of it and don't know how to treat it.
What I have is called Post-Viral AN. It means that I a quired it after a large shock to my body, probably caused by the CMV virus that I had at age 13 and an intense mold exposure around the same time. I'm the only one in my family who has it since its not genetic, but they could get it, if they get a big shock like I did at that time.
So back to the nature of chronic illness. A chronic illness is by definition something that never goes away. Yes, when my doctor said I would get better, he was mistaken. Whenever my body gets another shock, like pneumonia, pregnancy, or extreme stress, for example, all my symptoms could return. I discovered this by googling 'Dysautonomia' two months ago on a whim. I had heard that Dysautonomia was the new name for AN, and hoped to find some info on the web, since web searches 8 years ago turned up nothing. The information that I found changed my life. I now know that I could get sick at any time and take months or years to get back to normal functioning level. That a high stress job, such as being a lawyer, or any other form of high stress lifestyle could be severely detrimental to my health and cause an endless circle of AN. I've had to reevaluate my career and family goals and expectation of how my life will turn out - short term and long term. This has been hard psychologically to get used to, but I think I've got the hand of it now. My goal right now is to graduate law school and figure out everything later.
Probably the best discovery these past few months is that my family doctor magically began to understand what was going on with my health and has taken a more active role in figuring out how to return me to normal. Turns out that she had learned about Dysutonomia previously, though I am her only patient with the diagnosis, and didn't help me before because she didn't know what AN was, and just needed me to tell her it was another name for Dysautonomia for her to realize that she actually does understand whats going on.
So thats what the past few months have been like for me.
About five of you have encouraged me to post about this, so here goes.
I was diagnosed with Autonomic Neuropathy when I was just turned 15. The next few years were traumatic, but there was one aspect of my diagnosis that gave me hope for the future. Even when I had to lie in bed all day because my blood pressure was so low and I might stop breathing and all the other ways I could have died but didn't, my doctor told me that I would get better. And I did, eventually. I continued to suffer from what I considered "chronic issues," allergies, asthma, fatigue and a particular susceptibility to whatever virus was going around, which I understood to be remainders of the trauma my body had survived that would eventually pass as I got older and stronger.
For four years after high school I enjoyed what I considered to be peak health until suddenly a year and a half ago I got very sick. No one knew why. The doctors said it was stress, and it was, but not the kind that they meant. My Autonomic Neuropathy had come back, only this time it took me over a year to recognize it.
Autonomic Neuropathy (AN), also known as Dysautonomia is a malfunction of the Autonomic Nervous system. In short, it is the system responsible for everything your body does automatically, for example: your heart rate, digestion, breathing, blood pressure, pulse, body temperature, sweating, bowel function, sleep patterns, etc.
It is highly individualized and treatment can only be to manage the symptoms. Many people with AN have it with a more well known disease, such as diabetes. I am one of the rare people who only have AN. Because it is so rare most doctors haven't heard of it and don't know how to treat it.
What I have is called Post-Viral AN. It means that I a quired it after a large shock to my body, probably caused by the CMV virus that I had at age 13 and an intense mold exposure around the same time. I'm the only one in my family who has it since its not genetic, but they could get it, if they get a big shock like I did at that time.
So back to the nature of chronic illness. A chronic illness is by definition something that never goes away. Yes, when my doctor said I would get better, he was mistaken. Whenever my body gets another shock, like pneumonia, pregnancy, or extreme stress, for example, all my symptoms could return. I discovered this by googling 'Dysautonomia' two months ago on a whim. I had heard that Dysautonomia was the new name for AN, and hoped to find some info on the web, since web searches 8 years ago turned up nothing. The information that I found changed my life. I now know that I could get sick at any time and take months or years to get back to normal functioning level. That a high stress job, such as being a lawyer, or any other form of high stress lifestyle could be severely detrimental to my health and cause an endless circle of AN. I've had to reevaluate my career and family goals and expectation of how my life will turn out - short term and long term. This has been hard psychologically to get used to, but I think I've got the hand of it now. My goal right now is to graduate law school and figure out everything later.
Probably the best discovery these past few months is that my family doctor magically began to understand what was going on with my health and has taken a more active role in figuring out how to return me to normal. Turns out that she had learned about Dysutonomia previously, though I am her only patient with the diagnosis, and didn't help me before because she didn't know what AN was, and just needed me to tell her it was another name for Dysautonomia for her to realize that she actually does understand whats going on.
So thats what the past few months have been like for me.