Most of us are trained to respect doctors from a very young age. Doctors are right up there with police officers and teachers, they know all and must be obeyed with no questions asked. I agree with this attitude to some degree. Doctors deserve our respect, but they should only sometimes be obeyed, with many questions asked. Doctors are usually concerned with your well-being and will do all that they can to help you and advise you… to the best of their knowledge. That’s where it gets tricky, the best of their knowledge is limited. I hate to break it to you, but doctors don’t know everything. Medicine is a field that changes as quickly as any other. Look at a cell phone from even 7 years ago, it doesn’t look anything like the Samsung Galaxy 5 that you are thinking of buying. Medicine is also evolving just as quickly as technology. Many doctors are continuously studying and improving their knowledge, but it is hard to run a busy practice while keeping up with all the latest clinical trials. If you have an obscure autoimmune disease, odds are that your doctor doesn’t know everything about your condition.
My first gastroenterologist in Spain taught me how to advocate for myself. He patiently listened while I asked him all the questions that I had accumulated in my notebook. He made sure that I understood why I was taking the medications that he prescribed, and even explained the possible steps that we would follow if plan A didn’t work. Not all doctors have the time or energy to give this kind of attention to their patients. Many of them seem to assume that we aren’t capable of understanding the reasons behind the pills they are telling us to take. I suggest that if your doctor has this problem you look for a new one.
My hospital in Brazil was connected to a Medical School. When the doctors did their rounds they were often accompanied by medical students and would ask them questions about the patients illness and treatment, just like in Grey’s Anatomy. One day, a particularly large group of students walked in with the doctor. Without acknowledging my presence she began to ask her students questions and criticize the medications that the other doctor had prescribed for me. She then asked the group of students if anyone knew the difference between Remicade (which I was taking at the time), and Humira. Silence ensued. I raised my hand and asked if I could answer her question. I then rattled off the differences in application, indications, and protein formation between the two medications. The doctor was so shocked that I knew, that she didn’t know what to say. For me the doctor’s reaction to my knowledge underlines a pervasive problem: Doctors don’t expect us to be informed about our own health, much less the medications we are taking!
I have seen at least 10 different gastroenterologists for Crohn’s disease/ ulcerative colitis, and no two advocated the exact same treatment plan. They can’t even agree on a diagnosis! What does that tell us? Doctors are treating us according to what they think is right, but there is no “universal treatment plan” for autoimmune disease. The fact that there is no “one size fits all” treatment plan makes it even more important for us to be educated about our own health, so that we can advocate for ourselves. There might be a medication or some other option available that would be just as effective and possibly less dangerous than what your doctor originally suggests. However, if you are not educated enough to suggest other options or ask for a second opinion, you are likely to be stuck taking whatever medication your doctor tells you to take.
This is not only valid for autoimmune disease, but also for common ailments. Take urinary tract infections for example, if you go to the doctor they will probably prescribe a 5-7 day antibiotic treatment. There was a recent study that showed that 70% of urinary tract infections clear up on their own within 7 days. I am not saying that you should ignore your doctor, or refuse to follow their advice, but come prepared with your own information and questions. Ask if waiting a few days to see if you really need the antibiotics is an option. Find out if the aggressive treatment plan your doctor is advocating is proven to be both effective and/or necessary.
Here are some tips to help you advocate for yourself in a doctor’s office or hospital:
1) Medication is optional
When a doctor prescribes medication for you, you are not required to take it. Especially in the hospital, doctors will often prescribe nausea medication, mood stabilizers, and pain killers, just in case you start to feel bad when they aren’t doing rounds. During one of my hospital stays the nurses were waking me up at 3 AM to give me nausea medication. Why? Because it was on the list. Did I need nausea medication while I was sleeping? No! I probably needed sleep. Before you take any medication, ask the doctor to explain thoroughly the benefits and possible side effects. It is their responsibility and your right to know all that there is to know about any prescribed medication. If you are well enough, research the medication yourself and any alternatives that you find interesting. Often times if there is a medication that you don’t want to take, there will be another option. If you don’t ask, sometimes they will skip the important step of explaining your options. If you find a medication that you think could be good for you, print out information to show your doctor. Good doctors are receptive to new ideas, but make sure that your information is from a good source.
2) Painkillers could be causing you serious problems
Opiate based painkillers can stop your digestive track from moving. This means morphine, Dilaudid, Vicodin, and all those other fabulous drugs that immediately relieve even severe pain are in essence causing your poop to sit on open wounds (if you have IBD). If you don´t have IBD, they are probably making you constipated. When I was hospitalized in the USA the first thing that the doctor did was prescribe me Dilaudid. I had no idea why I didn’t have to use the restroom every 10 minutes anymore. Now I know. Sometimes painkillers will have side effects that the nurses are unaware of. As I detailed in my health history post, I once told a nurse that if he injected the Dilaudid as prescribed, I was going to throw up. He disagreed, arguing that nausea wasn´t a side effect of Dilaudid, injected the medication, and I promptly vomited all over him. In Spain and Brazil they rarely gave me anything stronger than Tylenol, which does nothing in comparison. I suffered a lot more physical pain, but was also out of the hospital much more quickly.
3) Have an advocate
If you are really sick, the last thing you want to be doing is arguing with a doctor. Make sure that you have someone (husband, sibling, parent, close friend) who is well educated about your condition and knows how you feel about diet and medication, who can help you out if you are in this situation. Ideally this person will go with you to doctors appointments, or stay with you in the hospital. This is important not only for big decisions about surgery and new medications, but also for basic things like controlling the medications that you are taking in the hospital. Mistakes happen. Once a nurse was ready to inject a medication in my IV that I wasn’t supposed to take until the next day. If I had taken it at that time, the results could have been disastrous. Luckily I was coherent enough to remember, but ideally someone should be there to take notes when the doctor does his rounds. That way you can make sure that the plan that you and the doctor decided upon is being executed, and keep track of new changes in your symptoms.
4) Get more than one opinion
Find a functional medicine practitioner, naturopath, or some kind of alternative therapist to work with you. They will work with you to sort out problems that you might be having with your diet and help you find alternative treatment options. They will run tests that other doctors wouldn’t do, which can help you find other issues that might be contributing to your health problems (hormones, nutritional deficiencies etc.). They are also medically trained, so they will be able to help you decide which medications could help you, and when you might just need to take the prednisone/antibiotics/drugs that your doctor is recommending. These kinds of doctors are more likely to collaborate with you to find alternative solutions and new treatment options.
5) Keep a journal
Keep a diary of everything that goes in and out of your body. This can help you discover possible triggers for your health problems. After a few weeks of keeping a journal you should start to notice patterns. Maybe you get headaches every Thursday, which coincides with your staff meeting at work, or maybe every time you have tomato sauce you get itchy skin. Writing down everything that you do and eat (and what goes down the toilet) might help you find hidden causes (stress, sleep, or diet related) for your hard to solve medical mysteries. You can also bring your journal to doctors appointments to point out connections between food and/or medications and symptoms.
I want to be clear that I have great respect for all kinds of medical practitioners. They usually are doing all that they can to help you, I just think that it is important that we also do all that we can to help ourselves. There is a time and a place for heavy duty medications, believe me I have taken them and they very likely saved my life, but I also think that we really need to know what we are taking before we take it. We must be aware of all of our options and the possible consequences of our choices. Whatever you decide to do for your health must be something that you understand and believe in, otherwise it is less likely to work.