I have heard this time and time again and it drives me crazy. Not because people complain, but because they have reason to. So there is one thing I want to tell you that you have to remember:
Your doctor works for YOU! Whether you pay the bill or pay for the insurance or pay the taxes that pays the insurance, your doctor is HIRED by you. You can interview them, hire them, and you can most definitely fire them!
We are what is called “professional patients.” This term has warranted some disdain in the medical field because doctors don’t like moms coming in and telling them WebMD says little Tommy is autistic and doesn’t just have the flu because he doesn’t answer him when she calls to him and blah blah blah. I get that. I have been in the medical field and when someone thinks they know what they are talking about, it is hard to convince them they are wrong or that there is another explanation.
That being said, people with chronic illnesses, especially pain related and especially since most of them are incurable, have researched the ever-loving-hell out of our symptoms, conditions, lab and procedure results, and looked for any and all explanations. We have tried exercise and diet and meditation, we have fought with the possibility that it is all in our head and we have looked for every reason, explanation, and hope there is. We, of any patient, probably know a lot more about our very specific conditions and symptoms that anyone else.
Sure, your doctor may have studied a little about Lupus or Fibromyalgia, but there conditions, like the many others of the same line, have a plethora of symptoms and possible explanations. They may know the common symptoms, the common diagnosis techniques, and the common age groups and demographics. But do they know the rarer conditions and symptoms? Do they know every test and every procedure and every symptom you have had and every possible explanation for every single one of them? Doubtful. Not that it’s their fault. They have many patients with many conditions and only specialize in certain aspects of medicine. Even specialist can be overwrought with all of the possible conditions and symptoms of their patients.
What does this mean? This means that you know you more than anyone else knows you. That goes for your body, your moods, the medicines you have tried that worked or failed, the diagnosis you have had that stuck or that were dismissed, the symptoms you have, the triggers you have, your family history, your medical history, and anything you could find and read and study about it. You know all this. But you can’t do much with the knowledge but go to a physician that has the means to help you do what needs to be done to give you the best quality of life. Whether that is medication, therapy, surgery, or whatever, you need their help to get it and you should have the choice of what you do and do not want to do to make your life more livable.
Now that train of thought leads to another argument that I will write about elsewhere. I believe it is up to the individual to decide if opiates, cannabis, diets, etc. is right for them. I do not believe the government, your mom or spouse, or doctor should have the right to tell you what you can or can not do to make your life better. You are an adult, or close enough (16 with a lifelong painful condition? Yeah, you can make your own choices about how you want to live life with it.) and so you have the ability and right to make those decisions and I am against any law that prevents it. But again, that’s a whole other box of worms.
My point with this is that you take enough crap and pain and aggravation being dealt the hand you have, the last thing you need is the very people that should be helping you, treating you badly. Screw that.
Now, I know (oh do I know!) the Russian Roulette of finding a doctor. You will repeat yourself fifty times, you will have to have tests done again and again, you will be questioned and disbelieved more often then you will be helped. This isn’t always a bad thing. My last PCM (primary care manager/family doctor) was very skeptical of a (at the time) 25-year-old who was slightly overweight and had nearly completed a master’s degree in neuropsychology as having the conditions I have. In fact, my first visit, she told me I was too young for Fibromyalgia. I persisted, I let her test and question me. At six months, she was asking me for my thoughts and suggestions before giving me her own. At a year, she never questioned me bringing up conditions or medications because she knew and acknowledged that I knew what I was talking about. I will never forget two years in when she came in with a student (after asking my permission, which they HAVE to do!) and told the student to throw the book out the window and listen to me. “She knows what she’s talking about and her case is not your typical essay question.” I felt so honored by her at that moment. I miss her deeply and, even though I now live a state away, I wished to hell I could still see her.
Despite the pain of finding a new doctor, do not let that hold you back from firing one who is unprofessional and that treats you poorly. Even more so, REPORT them if they are unprofessional or treat you poorly. You have to. It’s your right and your responsibility. You want something done about that crap, then take the first step. I use to hesitate, I no longer do. I have reported one facility and two doctors. I do not take it lightly and they have to seriously screw up for me to make a major report, but I will do it. You throw me out without looking at my file and call me a liar and say you are going to blacklist me because I have a pierced nose, wear dark clothing, and am under the age of 50? No the hell you are not. Judgments, discrimination, threats, and cruelty are unacceptable. Do not take that.
As I mentioned before, though, do not immediately dismiss a doctor for being careful or questioning. As many people they see with legitimate conditions, they also see people trying to scam the system. They can lose their license or even go to jail if they don’t see through the bullshit. So don’t hold the initial unsureness against them. Be persistent, intellectual, articulate, and confident. Keep notes on everything. Have a daily medical journal of how you feel, what you ate, if you slept or not and for how long, what meds you took and how you felt before and after. Keep a notebook with every doctor you have seen, every hospital you have gone to, every surgery, every procedure, every medication you have been on and are on, and every diagnosis (with dates!). I carry two notebooks with me. They are in a specific spot and if I have to go to the ER, my spouse knows to grab them. They save my ass. I can’t remember how much I slept last night, if I slept last night, so those notebooks are crucial. It took me forever to compile them when I realized I needed them, but now I try to keep up with it. I am terrible with the daily diary and miss huge chunks at a time, but the other one is crucial.
If you haven’t checked it out, patientslikeme.com is an awesome site that helps you fill out and compile all of these things online. They also have daily questions you can answer about symptoms, medicine, mood, quality of life, etc. They have print out options you can take to your doctor. They even have a weight diary. It is completely free and a big, big help.
So what have we learned? You are in control of who helps you through this. Your doctor, nurse, specialist, etc works for you and can be fired by you. You decide who treats you, who helps you, and what treatments you want to try. Remember that. There is little we can control about our conditions but who helps us through it is one of those things.