As a chronically ill person, it took me years to fully become the leader of my own medical team. Does that sound strange? Maybe. We’re taught that the person with the degree and the stethoscope is in charge, but only the patient – that’s you – should be the leader of your merry band of physicians, nurses, and other medical personnel.
Here are some things to keep in mind when you start being in charge of your own medical team.
Ever had a job with a mean, disrespectful boss? You didn’t want to do your best for that person, and if you aren’t nice to your medical team, you won’t get the response you want.
This is not to say you shouldn’t be assertive and look out for your best interests. No matter what anyone tells you, that doesn’t make you mean or bitchy or whatever they call it. And there may come a time when you have to be more forceful. (I discuss that later.)
You Deserve An Expert
When you first get sick, you usually visit your family/general practitioner. You don’t get better and go back over and over again. You begin to think that maybe you should see someone else, but you don’t want to make it seem you think your family doctor, who has taken care of you for years, is wrong.
Any family/general practitioner worth their salt will not be insulted if you ask for a referral to a specialist or even a second opinion. If you have a rare disease/condition (for example, Crohn’s disease is considered a rare disorder), your doctor may have never seen anything like your problem before. Maybe they read about it in medical school or a journal, but they aren’t up on the latest diagnostics or treatments.
Get a doctor in the specialty that covers your problem. And, if you develop complications, ask that doctor to refer you to other specialists.
Read everything (reliable) you can about your condition and new developments and treatments. An educated patient is an in-charge patient. Again, a good doctor will not be threatened by this. Good doctors appreciate it; it makes their jobs a little easier.
Don’t know which tests are being done when your blood is drawn? Nurse getting ready to inject something into your IV? Ask. Every time. Ask your pharmacist about any new meds you’re prescribed. And if you’re having surgery, ask all kinds of questions.
Choose One Doctor to Rule Them All
You are your own boss, but it helps to have one trusted doctor as your main medical contact. Too many people run into issues with conflicting treatments (especially over medication) because multiple doctors are prescribing without any coordination.
I have Crohn’s disease, so my gastroenterologist is my primary doctor. Outside of normal sinus infections and minor ills, I don’t do anything without checking with him. This is especially true if I need a referral to another specialist. I’m not giving him my medical agency; I am getting trusted advice.
Stand Up for Yourself
You may do everything I suggest and still find yourself with a doctor or treatment you don’t think is the best for you. Then you need to move from assertive to aggressive. Television often depicts us as screaming and unreasonable, but you can be aggressive with respect.
I have banned a general medicine intern from my hospital room. (Trust me; it was necessary. His boss even agreed with me.) I have refused further blood work until I had a PICC line. (I have horrible veins and an equally horrible time convincing hospitals to give me a PICC line at admission.) Refused medications? Done. Checked myself out of a hospital to go to another one because I wasn’t getting the treatment I needed? Yep, did that too.
I wasn’t always the boss of me. I learned the hard way that accepting medical treatment that wasn’t the best for me ALWAYS results in poorer health. I stand up for myself when I need to, and now my husband does it when I can’t.
Being chronically ill is a full-time job. Just like any job, there has to be one person with the ultimate responsibility for getting things done right. No one knows you like you. No one knows an illness like someone who has it. Don’t cede your medical power and become a consumer. Form a trusted team of medical professionals and make sure everyone – including you – is doing the best for your health.