I don't know how much of this I've written about here, but I need to clarify for myself what I need to tell Dr. Body tomorrow and this is my best thinking place. So, my doctor problem.
I know I've mentioned the basics: we weren't allowed to complain, particularly of pain, and so I learned to never ever complain. What I've not explained is the consequences of this.
As a kid we very rarely were taken to the doctor. Well, my sister was because she had allergies with frequent pneumonia, but I remember going to the doctor sick about 4 times as a child and one of those times was because I had a rash from being allergic to new carpet and was sent home from school until it was evaluated. Another time was scarlet fever. I was taken once soon after my grandfather died because of horrible stomach aches that I had for some time, and once for what was really depression but the doctor did not use that word or treat me for it, although he pretty much said that was what it was to me alone, then he gave my father some load of crap. I was taken to the ER at age 6 after falling and spraining my wrist and moaning much of the night in my sleep, waking my parents up. Otherwise I have several scars from wounds that weren't stitched, an ankle and knee that are destroyed from not being properly treated for injuries (all based upon that stupid ankle fracture), and memories of never, ever being home sick from school because we had to be extremely ill to stay home, generally vomiting. I also have a memory of vomiting all over my phonics workbook, desk, and everything around me in 2nd grade, and even worse vomiting all over the cafeteria as a 6th grader. Horrible.
I have a finger that was broken when my father threw a softball way too hard for my just-learning-to-use-a-glove self and I was not treated nor allowed to complain. It was splinted, again because the school nurse said so, but even then I was told when I complained that if I kept complaining that the doctor would take me to surgery and break it again with a hammer. Didn't complain about that again.
When I was 18 and needed my college physical I didn't want to see the doctor (not a pediatrician where we lived) who I'd always seen because I did not like him. (No wonder given he could have hospitalized me with depression and instead went with what my father wanted to hear, so I lived with depression for years longer). The doctor I picked had "never heard of" a tetanus shot allergy, but since my shot records clearly showed I'd been vaccinated in half doses since my first tetanus injection he went with it. I swelled hugely and when I went back in 2 weeks for the other half they were shocked to see how swollen I still was. I was given the other dose, but made to sit and be monitored for an hour (great fun for the child I was babysitting) because suddenly "this is a serious allergy". I told him.......After that I was told no more tetanus boosters, only give if clearly needed and only in an emergency room. That was probably the first time as a young adult I understated.
In college I got sick my freshman year and ended my 10 year no-antibiotic streak. After that I don't remember getting sick all that often in college, just colds, although I do remember having a stomach flu my junior year that quite literally floored me. I was so sick I fainted in the bathroom in the middle of the night. I never saw a doctor because I was too sick to walk to the health center. At the beginning of my senior year I did go to the dr. with depression after I finally gave up on my lengthy fight to not take antidepressants. I understated things and wound up with xanax to help me sleep. I knew this was wrong and did argue that I'd been referred for antidepressants, but they lied and said they'd check with the psychologist so I took the xanax and wound up knocked totally out. The next time I went to the dr. for antidepressants I had a specific letter from the psychologist about antidepressants. On the other hand, I never called the psychologist to question things for an entire week.
Over the next several years I dealt with doctors regarding antidepressants. Aside from needing pushed to go and complain that one wasn't working (or that it had made me lose 20 lbs in 6 weeks, or that I couldn't sleep AT.ALL or or or) I reached the point where I was almost psychotically fearful of doctors. I dreaded going to them. I worked horribly sick many times. I took my first 2 sick days after about a year of working and that was because of my so-called friend saying I was possessed etc. and I couldn't quit crying and therefore could not work. Any other time I'd been off sick, which I remember only happening once when I was vomiting, and I worked on the weekend to make it up. I had a friend/mentor/voice of reason who would pester me about going to the doctor. Generally after about 2 weeks of incessant "go to the doctor" about 33% of the time I went. When I finally became so clearly out of control that I needed a psychiatrist I did do that without arguing, more or less, but I also didn't argue with her no matter what stupid things she did. When I spent those 2 days crying I had to be pushed and pushed to call her and even then she just started me on ativan over the phone. So many times she could have diagnosed the bipolar and she didn't see me or spent 5 minutes with me and didn't try to get the whole story out. I do not really remember how I managed to find the Guru who finally really diagnosed me (we knew but he was the doctor) and there was a lot of stuff that went into begging to be seen and ultimately I was leapfrogged over a months long waiting list because I really needed to be hospitalized but did not have insurance for psych stays. The clinical trial was ideal for me because I had no choice but to see the doctor every 2 weeks for 6 months. Even then I had to be more or less forced to add a med to control the severe tremors I had on high dose lithium because I didn't want "more meds". By the end of the trial I finally was a bit better about at least talking to doctors about psych needs. Then I started with Dr. Brain and she rapidly won my trust, so that part was actually somewhat easy. I still had to be pushed to call her with problems, but I began to learn, and based on the clinical trial recommendations I didn't start with her until she was able to commit to seeing me for a monthly visit. I've never been stable enough to move away from that. I'm fine at telling her about problems now, but it took a long time to achieve that trust, and if I didn't see her so often I wouldn't be as good. That's also an issue with Dr. Mind; we can't manage cutting back to less than weekly because I don't handle it well. For now it's just not even something we discuss.
Medical doctors lost my trust totally though along the bipolar path. I had a doctor I liked in the city, but he couldn't easily be my doctor after I moved away. He also lost a lot of my respect when he and his secretary were making very inappropriate racist jokes about Muslims following 9/11, and again when he was upset he wasn't consulted when I went to a psychiatrist and also that HE wouldn't have me on an addictive med (ativan). By that point I'd been through the clinical trial and was seeing Dr Brain and was pretty certain that the benzo was quite appropriate for me, and as it turns out I've been on benzos nearly 8 years, have seen and also had my case reviewed by several of the top experts in bipolar in the world, and everyone has agreed I need the benzos and in generally they have readily increased them, even these last months when I've been on at monster dose of klonopin.
For 2 or 3 years after moving to where I live now I floundered. I couldn't find a doctor who would accept me and my psych meds as well as my insurance. I literally was rejected by doctors before they met me on the basis of my psych meds. So I used urgent care as my doctor. Urgent care doesn't like that much.......Eventually I started seeing a doctor where I worked. He was horrid. He was afraid of my psych meds (which were not nearly as scary as now), so he avoided treating nearly everything possible. I had infected cold sores on both sides of my mouth for 6 months. I am extra-susceptible to cold sores because of an accidental exposure that caused me to get herpes on my thumb and he agreed that's what they were and even gave me a 3 day course of valtrex, but when that didn't work he pretty much refused to treat it. After a very long time Dr. Brain got so fed up that she wrote for a month of valtrex and finally I no longer had ugly sores on my face. He refused to believe a healthcare professional could be bipolar, so even when I'd be wearing a name tag with MS OTRL on it he would call me a nursing assistant over and over. And then he wound up making me so mad I complained to the medical board. He said I couldn't take some antibiotic with depakote. Fine. So he gave me something else that had no chance of working against a sinus infection (I know now), and when I was still sick when that ended and called in he didn't see me but prescribed the med he said I couldn't take. I had to call and have another doctor give me something else. This was repeated 2 weeks later. So I reported him and he underwent a year long investigation that ultimately cleared him but certainly stressed him out and I hope made him think twice about that kind of crap. That put me back to urgent care alone, and urgent care doctors are hopeless with my restrictions. I've had to tell more than one to go and look lithium up in the PDR and come back when they had thoroughly read the interactions. I've been accused of drug-seeking because I am allergic to codeine and they won't believe I can't take ibuproferon. It's possible not everyone on lithium has the ibuproferon rule enforced, but it is an interaction and for me it is an issue because first I was on very high levels (my ideal level was just below toxic) and so anything that raised my level was out, and then after that I got toxic easily so raising my levels again was/is bad. I also had multiple fights over things like not being allowed cold meds.
I also had bad experiences with emergency rooms. One of them didn't admit they couldn't run a lithium level so they made me wait 4 hours while they took the blood to the city to run it and then got the results, and in the meantime rather than testing for anything else they needed to all they did was drug test (thoroughly) and do a pregnancy test. They then realized that my lithium level didn't tell them anything since it was 24 hours after I'd had a dose and the level was useless. Another ER was very angry that I requested a lithium level be done, depsite my having symptoms of toxicity and this is standard when any symptoms are present, especially in the summer on someone on a high dose. When we went to that ER I told my mother who went with me to be prepared to see me act not nice because they'd treat me like crap. She was horrified by the end, which culminated in my telling a nurse (an LPN with 1 year of training versus my master's degree) off because he basically told me I was too dumb to know what a part of the kidney he was referring to (loop of Henle) was. I told him "given I have a degree in biology and a master's in a healthcare profession I think I do actually know that". He then was snotty back. I was at that ER with a blood pressure of 200/100, severe headache (duh) and very, very swollen legs and feet. When I wouldn't take lasix (contraindicated with lithium) without speaking to a dr they marked I refused treatment and didn't give it to me until I demanded it 2 hours later, after being snotty about my coming in and then refusing care. I didn't refuse care, I asked to speak to a doctor. They also tried to tell me that my BP and swelling were NORMAL. Again, Dr. Brain wound up having to treat this, but I did agree to find a primary care doctor.
I spent part of a vacation on this and Dr. Body was the result. He agreed to my stipulations that while I know he's a doctor I have many allergies/interactions and therefore all meds must be individually looked up before I will take them, and Dr. Brain is in charge overall and if she says she doesn't want me taking something she wins, and that I expect her to be consulted in any situation regarding psych meds, particularly since she is very aware of my situation and will respond to emergency calls about me quickly. He agreed,months but had no doctor), and then began the process for him of learning to trust me. It took a little bit before he moved past misconceptions, but when he did he bought 100% into my treatment plan and needs. And he has let me learn to trust him far more than any other primary care doctor.
Our problem now is that I have to start trusting him with things I've never needed to trust him with before, and it scares me. He's treated me for years for various things, and he has even managed my psych meds for a month when Dr. Brain was sick after I got out of the hospital last year. He single-handedly caught and then researched and found treatment for me when my diabetes insipidus was new, and that is not usually caught just by looking at someone, as he did. He also worked very hard to coordinate a way for me to stay on lithium, found a doctor willing to work with that, and then after 2 years took over the care himself because the nephrologist was not very useful. Since very few people with DI are allowed to stay on lithium, doing this was pretty impressive, but everyone involved agreed I needed to be on lithium. Until this last year though we've not dealt with pain or any of numerous things I haven't moved beyond. Since he hasn't even challenged me on things like allergies we've not had to deal with disagreements. In fact he has taught about me as an example of a clinically complex patient who is managed atypically by letting me participate in and guide my treatments and that just because someone is bipolar they are not incompetent.
I trust him. I just don't know how to complain well about certain things. I can moan on here because this is a safe thing and if you are mean to me I delete you. If he is mean or doesn't believe me (which he has never done but which I fear every time I mention pain or something that can't be seen) then I am stuck. And that is what this very long thing comes down to: I fear not being believed. I also fear that what I was taught as a child is true and that I would "make something up for attention". I don't know why, I know I wouldn't, but I still don't trust me, so I don't trust him.
And again this has clarified things for me. Thank you.