To share how I self-advocate at the doctor?

I’ve been debating and pondering and contemplating how to share the things I do which come down to advocating for myself when I’m seeing one of my many doctors. Is it even worth doing? It’s different ways I cope with all the doctors I see and no one having anyone else’s information unless I make sure they send it. I have typed up information I provide to new doctors and old doctors periodically. I’ve just started using a journal to keep track of appointments. I even give my doctors lists of all my doctors – with at least their phone numbers.

There’s lots of little things I do too that are advocating for myself. Doctors need to be able to be willing and able to answer my questions, or at least most of them.

Should I make a series of blog posts about advocating for yourself, as the patient, with medical professionals?

Tips on how to go to the Doctor

As I’ve spent more and more of my time going to different doctors I’ve realized how much people don’t know about how doctor’s offices work. Also, different doctors or practices obviously have different procedures. As of the last few months, maybe even the last year, I now try to do certain things when going to the doctor. It’s probably why I’ve decided to also refer to myself as a professional patient.

I find lists are easier to read on the Internet. For the most part these are in no particular order.

1. Give yourself enough time to arrive and have time to park, depending on the parking situation. Especially give yourself extra time if the location of the appointment is unfamiliar.
Example: Some of my doctors are in a hospital office building with valet. The parking is so ridiculous valet is the only option. I try to give myself ten minutes because I don’t how how busy valet is.

2. Try to get there at least three minutes before your appointment time. Five to ten is better. It takes a few minutes for the person at the front desk who checks you in to let the person who will come get you that you are here. If there are four appointments before yours and those four people arrive in the waiting room at their appointment time and it takes five minutes for the nurse to come get them, you might wait an extra 15-20 minutes because of that alone. This leads into number three.
There are other reasons too, like maybe you have to fill out paperwork. New patient paperwork obviously takes more time.

3. Doctors can only see patients as fast as their nurses/assistants “check them in.” When you go back to the exam room the “nurse” is going do any number of things: check your vitals, gather information about your visit or changes since your last visit, and confirm there have been no changes in your medicine. This takes time. It will probably also take time if they are new at their job/position. This leads me to number four.

4. Tell (all of) your doctor(s) about all of your medicines. It doesn’t matter if they are over the counter or something you don’t take every day. This is very important. If you don’t tell your doctor all of your medicines, vitamins, supplements, and other over the counter “things” you take, how can you expect your doctor to help you? Basically this can be summarized into two words which leads me to number five. If you can’t remember everything, it’s okay to make your own list of your medicines, supplements, and anything you take as needed. You can provide this list to each doctor. If that list is also organized and everything is spelled correctly, your doctor will really appreciate it.

5. Be honest with your doctor, nurse practitioner, physician’s assistant, medical professional. If you aren’t honest then they aren’t working with all the information. What’s that saying about assumptions making an ass out of everyone? Honesty leads me into number six.

6. Remember that everyone’s day is always easier and more pleasant when everyone you meet is respectful and courteous. The people working at the doctor’s office do realize that a lot of people are stressed or not feeling well when they arrive. Sometimes the people at the front desk are rude. It happens. There’s only so much you can do about it. However, if your doctor is rude or disrespectful to you, try to find another doctor. Your doctor should respect you and listen to you. This is how you can build a relationship with your doctor and learn to trust the advice and “orders” your doctor provides you.

7. Most doctors will call you to confirm your appointment. If you don’t get a confirmation phone call, email, or text message, you might want to call and confirm your appointment. Also, if your doctor wants you to follow-up then there is a reason.

8. Don’t put off scheduling any appointments, that way you have more choices for when you’d like the appointment. New patient appointments are different from regular appointments and take extra time. Make sure to not procrastinate scheduling with a new doctor because you may even have to wait for months before you see the doctor. If your doctor is often running late (for whatever reason) it might help to schedule appointments earlier in the day.

9. Most doctor offices prefer that you call and let them know you are running late. However, past a certain time frame, they might request you reschedule. Some doctors will make you pay. In my experience, most doctor offices don’t mind if you are 5-10 minutes late, especially if you call ahead and are respectful and courteous. What to do when the doctor is late varies.
Example: One of my doctors has a sign in the waiting room requesting that you talk to the receptionist if you are waiting for more than 20 minutes. However, my neurologist runs late for varying amounts of time on different days. I realized, eventually, that she runs late not because she’s disorganized but because she doesn’t rush her patients and sometimes there are a lot of questions!

10. Finally, never be afraid to “fire” a doctor because that doctor is not listening to you. Just be warned, this is not the same thing as you not listening to your doctor because they are saying things you don’t want to hear.

If you think I missed something, feel free to say so.

Gastroparesis: Sometimes you know more than your doctor

(American) society still seems to have this thing where doctors are revered and assumed to know this amazing amount of knowledge about things no one else understands (except on tv). It started hundreds of years ago with licensing and membership requirements to be able to restrict people who wanted to be doctors and it still hangs on… even though medical care in this country isn’t as good as other similar countries. Obviously the licensing is important and needs to be required. It offers protection. Not many people understand they must be honest and open with their doctors. Not many people understand that doctors should be willing to respect their patients. Doctors are not omnipotent gods.

All that said, people with chronic illnesses can end up knowing more than their doctors… or anyone they interact with who is a “medical professional”. Yesterday I explained gastroparesis to two different people in a medical field. The first was a dentist… I can completely understand a dentist not knowing about a GI disease but it’s still weird to have to explain. (See above.)

The second person was a dietician. I explained what my GI tests had found and in front of me she turned around to her computer and googled Gastroparesis. She printed out information from one site and then went over it with me. She kept on even after I realized it was a print out I had at home that I’d read through. She ignored the things I said like:

Information on gastroparesis varies between sources.
There’s only so much my doctor can help with because some things I just have to figure out on my own.
I needed lifestyle changes, not just diet changes.
Gastroparesis makes exercises difficult and problems with pain and fatigue make exercise harder.

Mostly she was happy about my weight loss. The weight loss I’d achieved because the gastroparesis limits how many calories I can consume at one sitting/in a day. One she was so happy was because she has to follow FDA guidelines. Guidelines that are for healthy people people not like me… people without chronic diseases that have no cure and aren’t caused by obesity. The only thing the dietician really helped me with yesterday was a little bit more understanding on how to approach monitoring my calorie intake – and how much fat, protein and carbs I need. Now that I think about it the only reason why I want to see her again is to see her response based on my additional weight loss…. I still can’t eat as much as my recommended calorie count for a day, so my weight loss will continue. (Hopefully I won’t add it back on later.)

The medical field in this country needs to change, but because our government’s views on medical care access are based on how much people deserve instead of recognizing that medical care access is a human right, we still have very far to go. This should also include changing the relationship between doctor and patient. People need to learn to advocate for themselves, which isn’t the same as arguing with their doctor that WebMD knows more. We need to learn to value our health and know that sometimes lifestyle changes are necessary.