It can be overwhelming to have a serious illness. There are often many different doctors involved in your care and sometimes they can be telling you different things. Sometimes specialists don't communicate with each other and you as the patient is left in the middle to relay information. Other times a provider may have an opinion you disagree with.
So what do you do in this situation? Do you just let the doctors figure it out because that's what they went to school for? Maybe. But if you do you run the risk that someone will forget something or something won't get done for you and your care could suffer. You need to advocate for yourself.
How do you advocate for yourself? Do you yell at your doctor and say "I'm going to do what I want and I don't care what you say!!"? Do you ignore what your doctor tells you because you don't agree with it? No. You figure out how to facilitate communication between you and your health care team so everyone is on the same page.
It helps to have medical knowledge but this is not necessary. Here are some suggestions:
1. Always carry a notebook with your medications, chronic medical problems and the names and phone numbers of your medical team. Pull this out at every appointment and make sure it stays up to date.
2. When you see one provider make sure you write down what happened during the visit and what their recommendations were. A lot of offices are now giving out "after visit summary" sheets which are very useful. These sheets usually have the provider's recommendations on them and can be saved for future reference.
3. If one specialist tells you to do one thing and another one tells you to do something different you should point that out to them. (This is where it helps to have the after visit summary forms) An example of this might be that your gastroenterologist told you to stop a medication but the surgeon told you not to. You could suggest that the specialists communicate with each other and come to a consensus. This is not rude or disrespectful, this is helping to coordinate your care.
4. Stay on top of your medication changes, refills and any scheduled tests or exams. Don't leave this to your doctor to remind you when things need to be done. Things can be missed, especially if your care is coordinated between multiple specialties.
5. If you see a provider who outlines a plan of care that you don't agree with then you can ask them why they feel that is the best plan. Have a rational discussion and then give it some thought. If you still don't agree then feel free to seek a second opinion. This is YOUR LIFE and you need to do what you feel is best for you.
Advocating can be scary at first. But remember YOU are in charge of your care and your life. No one will stay as on top of your care as you will. Your health will be better for it.