I have to admit, the past few months I have not been a very good advocate for my fellow Cushing's sufferers. I don't have any excuse except that I am sick to death of Cushing's. I want it eradicated. I don't want people hurting and suffering, and for awhile I just couldn't stand to watch others going through it. It is a terrible, heartbreaking disease that destroys lives and relationships, as well as bodies and minds and self-esteem. It steals years from patients, as doctors hem and haw and let us suffer. It's just not right.
I've even found myself not wanting to get to know more Cushing's patients because I know what they are going through, and I just couldn't deal with more of the same thing. I know that is selfish, but I think it was really just self-preservation. But I am beyond that now, at least I hope so.
If I were to tell you of the people I know who have had dozens of high tests over a period of years who keep getting told to wait for surgery because "I'm just not sure", you would not believe it. If you get a high midnight serum test result, the doctor explains it away: You must have been stressed driving to the hospital at night. If that were true, why do we never have highs in the daytime due to driving to the hospital? It just doesn't make any sense. But do these doctors even know that cyclic Cushing's patients usually have low daytime levels and high nighttime levels? I am quite positive that they do not.
I have a friend who mainly gets highs on all her tests. Every time she gets one, the doctor tells her to try one more. If she should get a low result the doctor says See? You don't have it! But she gets more highs than lows and the doctor never will admit that she has it, and she will not send her to surgery. This woman is sick, and has gained 80 pounds. She is a beautiful woman without a moon face. But she was a size 2 in her former life, the one she lived without Cushing's. She was willowy then, and she has always had a slender face. She doesn't fit the picture most doctors think all Cushing's patients look like.
It's not fair! It's not right! They are making people suffer, and why? Because they were told in medical school that they will probably never see a case of Cushing's in their lifetime - that's how rare it is. My friends and I agree that they probably won't see a case in their lifetime, because they will not open their eyes, and they will not open their minds, and they do not read the research that says it's not as rare as they once were told.
I am angry about how I was treated when I was so sick. And I am not alone. I'm going to work at being a better advocate.
1 comment:
Wow! This really hit home for me since that is exactly what would happen with me. I had almost all high tests but whenever I had one that was slightly lower, I was told that maybe I was reading too much on the internet.
I understand wanting to runaway from Cushing's. It does hurt to see people suffer and not get the help they need.
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