Wednesday, April 28, 2010

Why I Hate Doctors

I had an appointment with a new rheumatologist last week which went badly, meaning on my scale that not only did I receive no help, but I also got verbally abused.

In the hour-long initial appointment this woman mocked my degree, insinuated that my problems were primarily mental, insinuated that I wasn't as sick as I claimed, intimated that my diagnosis was wrong and that I just needed to accept this and get a job. I refuted this onslaught as politely as I could, being far more polite than I would have liked to be.

Fear was swirling in my belly during my appointment, but I didn't allow it to show. Fear of incapacity, fear of pain, fear of sickness. As opposed to the fear of two years ago...fear of getting a bad grade. Or maybe fear of Starbucks being out of melon syrup.

Fear is an emotion that I feel but almost never acknowledge, covering it up with anger, sarcasm or put-on self-assuredness. My current ordeal ties into that feeling of being a child all over again, and discovering that you can feel real, pure, unalloyed fear at 29 years old.

I had encountered few challenges in life that didn't yield to a combination of will and intelligence. But I now have to rely on other people to live any sort of life. Not only friends and family, but strangers.

And these strangers, my doctors, will not have me.


Anonymous said...

I do not know if this will help you, but I have found that keeping a log of everything I haven't been able to do (along with pain measurements every few hours) is the only way to convince doctors of the severity of my pain.

My log has entries like this:

10:00 AM - alarm went off, but I was in too much pain to get out of bed even to take my medication, so I re-set alarm to 11:00. Pain 9/10

11:00 AM - after spending the last hour slowly and gently mobilizing my body, I was able to take medication and go to the bathroom, but the pain was so bad I couldn't see straight and had to go directly back to bed. Missed class. Pain 8/10

So on. Every time there was something I was supposed to do that I couldn't, like meeting someone for dinner or going to class or even just getting out of bed or studying, I noted it down. I wrote down how many meals I missed because the pain made me too nauseated to consider food. I wrote down how many of my daily exercise and stretching sessions I missed (which was a HUGE weight in favor of getting proper pain management - I think this is what swayed my pain management doctor to give me a 24 hour opioid). Everything that I wanted to or was supposed to do that I didn't, everything that a normal routine for me if the pain wasn't so severe, I wrote down.

It was a royal pain, I'll admit, and quite depressing to see this long list of things that I didn't do because of the pain that comes with this collagen flaw. I took a 2 week long log to my pain specialist, and my medications improved substantially. I did better again when I finally got my EDS diagnosis - I had been seeing the pain specialist for about a year before that happened.

It may not work with your doctors, especially if they blame you for 'letting the pain control you'. On one level, I guess they're right. Out of control, unmanaged pain does control your life.

But it's not YOU doing that to you. It's the EDS and the poor pain management.

Yvette said...

Kali, thanks for your advice. I did try something similar, but instead of writing down what I couldn't do, I would just write down what I did do. Your way sounds more effective. Although dealing with this particular doctor, I have a feeling that nothing would have convinced her; she was just dead set against managing my condition. This rankled me, because she was the rheumatologist my geneticist said she sent all her EDS patients to!

I don't even know. Through pain management I've managed to obtain a small supply of pain medicine. I chafed at being treated like a criminal, but whatever.

Damn, this comment sounds bitter. I really do appreciate it.

Anonymous said...

I also kept a "pain journal" with the same information, and putting down what you can't do is more effective than putting down what you can.

But some doctors just won't listen no matter what you do. It sounds like that rheumatologist is probably one of those doctors. I have yet to have even a remotely decent experience with a rheumatologist (I call them DOOMatologists).

The last one was so bad that I got up in the middle of his abuse, walked to the door, turned around with my hand on the knob and said, "You are a terrible doctor. Please retire. NOW."

I'm sorry you had to go through that. It scares me that this is the moron the geneticist sends all their EDS patients to, though. Be sure to tell your geneticist honestly about how bad the appointment was and discourage them from sending any more EDS patients there.

loveable_homebody said...

I'm so sorry you suffered this abuse -- you seem to be one of many in this boat. I don't get it. I mean, I've had less than helpful doctors in my life, but none have denied the existence of my conditions or symptoms or refused to help me feel better. Why do you suppose you and others have been treated this way?

Also, it sounds like you're suffering quite a bit -- for a doctor to scoff at that, or question it, is possibly the greatest insult there is, at least one of them anyway, to a patient with a chronic, disabling issue.

I really like your commenters' idea of keeping a journal of symptoms. This can help you find patterns in your ways of living that might mean you should change them. I haven't kept such a journal because I don't want to become even more conscious of my symptoms and I am hesitant to make connections that may not be there.

Thanks for Following my blog, Yvette! I hope you find a new rheumatologist and get some control of your symptoms. I haven't read enough of your blog to know if your family and friends and other doctors are caring and supportive, but regardless, I'm glad you have found great support through your readers.

Yvette said...

Ashley, thanks for commenting. I stumbled across your blog; I love your sense of humor.

Your question was so interesting, I've decided to address it in its own entry. Keep an eye out.

loveable_homebody said...

I love to laugh! No problem, Yvette! I just read the entry and I thank you for the link to my blog! I think there are so many different perspectives on and experiences with illness. It's interesting.