A Professional Patient?

I have on staff, a general medical doctor with nurse practitioner, a rheumatologist, one gastroenterologist, one colorectal surgeon, a neurologist, an ENT/allergist, two gynecologists (I’m complicated since I have an ileostomy) and a host of nurses and lab technicians who assist those people.  You know what?  I was not meant to be a professional patient!   I am the care giver.

I was supposed to go to the doctor, get fixed, and go home.  Isn’t that the way it works?  You get a prescription for 7 to 10 days and by day 3 or 4 you are better and wondering why you need to take the rest of those pills.  There are many, many people with a chronic condition, illness or pain so I know there are a lot of you that can identify with that not working.  So, I accepted it when that wasn’t going to work for me and decided to just get on with it.  What’s next?   When I had one doctor, one diagnosis, one treatment plan, I could go in, get all the information, ask all my questions and come out knowing what I needed to do.   But when you have one auto-immune illness you are more likely to be diagnosed with another, like an arthritis and IBD in my case.  Multiple doctors, multiple diagnoses, multiple treatments and medications can get confusing.  You can begin to feel like you are the professional, like being a patient is your job.

That is not supposed to be me!  I’m the caregiver.  I don’t say this out of indignation.  (Well, okay, maybe there is some indignation there.)  This is actually what happens to me when I am in the office in a chair or on the examining table.  Doctor, “how are you?”  Me, “I’m fine.”  What?  Did I just say that?  Doctor, “how’s your pain?”  Me, “okay, I can stand it.”  Again, did that just come out of my mouth?  I’ve been doubled over!  Doctor, “do you need any refills?”  Me, “I’m not sure, I don’t think so.”  In my head, how could you not be sure?

A visit to the doctor with any member of my family, or any friend is completely different.  I am the greatest health advocate they have.  I will remember everything they need, have a list of symptoms, a list of question, jot down what needs to be remembered, ask about the medications and side effects, you name it.  I have had people ask me to go with them a second time after I have gone with them.  I had a doctor ask for me by name to get a health history for a family member in crisis because they knew I would have all the information.

So, what happens when we ourselves get in that chair or on that table that turns our brains into jelly?  I’m not intimidated by doctors so that can’t be the problem.  In fact, I am very comfortable with mine.  Is it just the fact that the whole experience is overwhelming and intimidating?  I find that all the things I tell other people to do so they have a good visit with the doctor, I do not do for myself.  I just go.  I don’t prepare.  If I am going with a family member or friend, I prepare.  Every time I leave the office, I say next time I’ll be prepared.  And next time, I’m not.

I think I need a friend like me who needs an advocate but can advocate for me.  If you are in the same place, find someone to go with you.  Or hey, give me call, maybe we can trade appointments.   At the least, get yourself a notebook.  Write down all your medications and all your allergies.  You can jot down your questions as you think of them so you will have them in the doctor’s office.   And you can make notes before you leave the office of things you need to remember to do.  Really, I should take my own advice.  But if I do, will I be a professional patient instead of caregiver?  Is that why I don’t?