a little more compassion
I have a renewed compassion for people with misunderstood diseases now. I'm the lucky winner of a mysic diagnosis myself, that of intrahepatic cholestasis of pregnancy, or obstetric cholestasis. It occurs in .1% of pregnancies in the US, and is pretty misunderstood and not too well studied, simply because of the lack of people who get this lovely thing. The only symptom is itching. Itching until you think you are losing your mind. Sounds minor, right? No big deal, you could be on dialysis or lose a limb if you had another disease. And that is true. I'm not here to say I'm a martyr or anything. But the other little issue I have with this disorder (which ends after pregnancy with no lasting side effects) is that the still birth rate goes up to 10%. That's one in ten for the mathematically challenged such as yours truly.
My doctor didn't really know much about the course of this disorder upon my initial diagnosis (I have had this before with another pregnancy and a different doctor, so I had a few clues.) I can't imagine now facing a whole lifetime of a stream of doctors who don't understand what you are going through, or don't understand the intensity of your symptoms, or don't take the time to come to understand any of it. At least there is a light at the end of this tunnel, and I know it can recur in another pregnancy, but it's not going to be a part of my life forever. I just think about all those people with MS or lupus or other chronic disorders that are crippling, misunderstood and not recognized for the havoc they wreak on one's daily life. So I guess if this experience makes me have a little more compassion for others, it's been worth it, right?
My doctor didn't really know much about the course of this disorder upon my initial diagnosis (I have had this before with another pregnancy and a different doctor, so I had a few clues.) I can't imagine now facing a whole lifetime of a stream of doctors who don't understand what you are going through, or don't understand the intensity of your symptoms, or don't take the time to come to understand any of it. At least there is a light at the end of this tunnel, and I know it can recur in another pregnancy, but it's not going to be a part of my life forever. I just think about all those people with MS or lupus or other chronic disorders that are crippling, misunderstood and not recognized for the havoc they wreak on one's daily life. So I guess if this experience makes me have a little more compassion for others, it's been worth it, right?
posted by Left Coast Sister at 7:08 AM
3 Comments:
Ah--hang in there yourself. You're minimizing your own suffering--it's not a "little" itching! And it's not a minor thing. Anyway, I understand that the point of your post was not to have your own pity party, but I think one is due ;)
Thanks... but what were you doing up at 4.11 a.m.?? (: Maybe I should have more compassion for YOUR profession!!
yeah, 4:11. I almost thought you were at our house for a minute.
and not the itching again!!!! Oh, no! So....a little scary. Any decisions or are you going to wait it out?
Don't go crazy, tho I can imagine it must seem like you are at times. Yikes.
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