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Adjusting Expectations

Posted Jan 26 2012 12:26pm

This just my thinking therapy… And, I’m pretty much ranting.

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I had the second meeting with the new GP. I was hoping that we could have some understandings of each other, but I left his office with the strong feeling that I can only see him for prescriptions.

I’m a little suspicious that the reason why he didn’t want to treat me at the first place was the same reason that many Asian men don’t like Asian women who adopt Western life and Western friends. I wanted/hoped to clear the suspicion so that we could develop the doctor/patient partnership based on trust and respect… I cannot pin-point the reason(s), but I know now that there won’t be a partnership with this GP…

Adjusting to a new GP style is not easy for me. He basically doesn’t want to hear about how I am and anything about ME/CFS. He asks questions, but doesn’t let me finish my explanations. When I need to explain symptoms and conditions in order to answer his question properly, they ended with his question, “Are you sure it’s not psychological?” When I try to explain the reasons why it is not psychological, he stops me. I found this very uncomfortable, if not upsetting.

I don’t have medical degree. So, I cannot explain things as the way a doctor can understand.

He tried for the last time to send me back to Dr AV… After how Dr AV and the Practice Manager treated me, there is no way I would go back to Dr AV.  I explained to Dr WL the safe version that it is not easy for me to show up earlier appointments because I’m very sick earlier in the day, I’m slow to get ready, and I need to rest while I’m getting ready… Of course, Dr WL stopped me from explaining… He didn’t want to hear the detail, but he just wanted to confirm that I cannot come to the earlier appointments… I’m sorry that Dr WL is the only doctor available for me now…

He also made me feel as if I was being interrogated about my sex life. I think it is obvious that there is no opportunity for an isolated and housebound woman without a boyfriend can have the “action”, but it seemed too hard for him to believe… He didn’t let this subject go easily. He didn’t understand why and how I take the birth control pill when I don’t have the “action”… When I started explaining that it is for minimizing the ME/CFS related symptoms, he stopped me explaining. I don’t know why my non-existing sexual activity is more important than understanding my disabling condition… In the end, he awkwardly told me that I should have Pap Smear. I’ve already had it done last year by a visiting female nurse and I don’t need to have it done for another 2 years. And I will only have it done by a female practitioner.

I didn’t respond emotionally to his attitude. There was no direct confrontation from him. I managed to keep friendly attitude. I just went with the flow. I better not waste my energy and sanity on something that I cannot change. At least, he didn’t pretend he knows everything. And I should be grateful to have a doctor who prescribe medicine to me.

Since I’m on bad flare up at the moment, cognitive function struggles badly. I cannot do a simple algebra in my head in his office… I feel I’m stupid, but I don’t have the opportunity to explain it is not because I’m stupid, but because of the neurological disease I suffer from… I struggle with his “how many years ….” and “how old were you when…?” questions. My cognitive function is better comparing to a year ago. I can do simple math and spell my name in my head when I’m not exhausted. And this poor cognitive function is one of the reasons why I cannot work. The other day, I had to make a phone call to order contact lenses due to their malfunctioning website… There were lots of spelling over the phone and it completely crashed my brain. I also needed to lie down as the effort also crashed me physically.

I didn’t have the chance to mention how bad my cognitive function is because this is another information that he wouldn’t want to hear… If he thinks I’m stupid, I have to leave him believe I’m stupid… However, I don’t want to leave him believe I’m crazy because it would affect the treatment of my physical condition.

I don’t feel he is my treating doctor. And I feel this won’t change. He will just prescribe medicines. He refused to prescribe medicines based on trial studies on ME/CFS. It was very clear that he only practices medicine as a job within his comfortable square box.

He didn’t get it why a person with a balance problem and weakness need to use a walking stick.

“Have you ever fell?”

“No, I haven’t, but I’m trying not to.”

Then, he looked at me suspiciously. I actually fell in the bathroom and nearly broke my neck in the past due to the balance problem. But I felt I better not mention it. I use the stick not because I’m crazy, but because I have physical problem walking without it.

I explained I can only walk for a short distance, and I need to use wheelchair when I go to the shops. He asked why I need to use the wheelchair. I started explaining what happens if I try to walk there. If I try, I would probably crash/collapse with exhaustion, weakness, breathing problem, paresthesia, black out, paralysis, and etc… And while I recover from the crisis, I get twitches like seizure and muscle cramps. I use wheelchair because I don’t want to have the humiliating collapse in public. Once again, he stopped me very quickly from explaining, and asked “Are you sure it’s not psychological?” I was offended, and tried to explain calmly why they are not psychological. But he stopped me again and just looked at me with the suspicious eyes. Our eyes met, and he quickly looked away. I sighed in my mind. Now I’m wondering if he would sign the form when my disability parking permit needs to be renewed… To him, I use wheelchair because I’m crazy… I don’t use wheelchair for fun. It’s easier to walk than push the wheelchair. I can only use it on my good days, and I hardly have a good day. When I have to use it on my bad day, I end up being red-bound with exacerbated and extra symptoms. And he thinks it’s psychological…

He told me that weekly appointment is not necessary. I felt that we still need to have mutual understanding of my problems, so I suggested to come weekly for a while as his original suggestion. He kept his back at me and said I could see him if there is something necessary to talk about. With his attitude, my effort would be just a waste of energy. I might go to the next appointment as he was going to check about a medicine/supplement I’m taking. After that…, I don’t see a point of talking to him.

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Although he doesn’t say anything about ME/CFS, I can tell he is treating it as non-existing disease. His attitude is making it very difficult to ask for the help I need. I don’t think I would ever get better with the new doctor. Life without hope is really tough to get used to. I don’t know how I can manage to keep hanging in there. I’m still grieving for the loss of compassionate and diligent treating doctor… The other doctors and the practice manager’s attitude doesn’t make it easier for me to cope. I’m relieved that the receptionists who know me are still being friendly to me.

One of the forums I belong brought up a topic about  Medical Cooling and Heating Electricity Concession from Qld Government . I’m sad that my new GP cannot help me with the application as he has no idea that ME/CFS is a disease with “loss of thermoregulation” and he doesn’t want to know about my condition…

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I hope desperately that one day all doctor knows about ME/CFS. Instead of a patient explaining the symptoms and disabilities comes with the disease, it would be nice to hear a doctor explaining about ME/CFS and why we have those symptoms and how to treat/manage them and get practical support. No patient should be confronted with accusations, suspicions, ridicules, disbelief and the thick cold mental wall.

Under the current circumstances, I only receive further suspicion when I try to explain… I don’t want to get involved with this psychological game that doctors are playing on patients. I’m not a drama seeker nor an attention seeker. I just want to get better and start to live life again. When “getting better” is not an option, I expect doctors to understand and give help and support that are available when there is compassion. Instead, I’m adjusting to lower my expectations for doctors…

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