DSN Weigh In-Getting the Most Out of Your Medical Experience

Going to the doctor for me used to be something I did on a whim, when I experienced sore throat or injured myself (which was a lot, growing up). I went, paid my co-pay, briefly told the physician what was ailing me and left. I never, ever made a follow up appointment. I would follow the doctors orders till I felt better and then life would return to “normal”. I say normal, but normal for us zebras and spoonies is apparently very abnormal to healthy individuals. I found that out when I married my husband and he consistently reminded me “that isn’t normal, Reanna”. The way I approach doctor appointments has changed and evolved out of experience and necessity. I strategically schedule them around certain times of the week where I will have or need more spoons and I consolidate them so I only have to be out two days a week. Although I am finding that strategy is working against me sometimes, due to rushing if a doctor is running behind. I adapt and adjust based on my experience and suggestions from other patients and friends. That is why this weeks Weigh In Wednesday is on “How to get the most out of your doctor visits”. I also will include a link to a Mighty article I wrote about Patient Advocacy and how to utilize that, as well. The two topics go hand and hand. It takes time and courage to learn how to advocate for yourself. When you do though, you will streamline the process of getting medical care. You will be able to ask for what you need, articulate your symptoms and respectfully disagree when you feel a treatment may not be right for you. I hope you enjoy the insights shared by other DSN members and are able to apply it to your own medical experience!!

Kim E- Write a list of the most important things you want to discuss. I swear, every time I go to the doctor I forget to ask about something I need. Have a digital note of all your meds/supplements in your phone. I always think I'll remember them, but by the time I get to that point my brain has other ideas.

Laura G- Really advocate for yourself. Believe me I know the system is frustrating but if we don’t stand up for ourselves and our symptoms, no one will, especially not the physician, we can be to much for them. I asked Laura for an example of advocating for yourself and she shared this with me “During the process of trying to be diagnosed, I was being seen by a cardiologist who I felt wasn’t really “hearing” me and the symptoms I was having. So, I told him how I felt and expressed to him that I wanted to be seen by a different cardiologist in his group. I had a specific provider in mind and I needed him to release me and then refer me to him. That for me was hard because I was used to advocating for others in their healthcare but not for myself. I felt that the cardiologist just didn’t know what to do and was treating me symptomatically and and not looking at the whole”.

Scott T- I carry a 4" binder with test results, past test dates, doctor info, meds., and my log of daily symptoms. I also bring my laptop with my medical file on it that I've organized for the doctors to view easier than their own system. I always bring someone with me into the appointments, in case the fog rolls in.

Joy D- I have a binder as well, it's a zippered red bag that holds everything from my physicians cards to my last appt notes to the CDs with my radiology stuff and the written abstracts. I keep my meds list on a Google doc and change it each time a Rx change and update it at every monthly refill.

Reanna M- I have a binder also, it includes full symptom lists that go with me to every appointment. It helps my doctors track my illnesses and it also helps with my disability case. I always have my imaging disks with me and not just the reports. My last summaries from my last specialists appointments in case my provider wants to see it. An updated specialists list and medication list, as well. Any test results and reports, as well as tests and imaging that is upcoming. Treatment plans from other providers are in there as well. All of these items get copied and put in my chart at all of my visits. I also have a complex case manager through my insurance company. She has saved me HOURS of work.

Sarah W- Don't be too ashamed to tell the doctor about any of your symptoms, no matter how odd or gross it may be. They can't help you if they don't know it is going on. Don't over exaggerate or underestimate the severity of your symptoms, especially pain and fatigue.

Sarah C- One of my biggest tips would be to write notes before each appointment. For each new doctor I see, I type up a 2-3 page summary of my health. It includes all my diagnoses, medications, current symptoms, lifestyle (diet + exercise), list of all the doctors I routinely see, undiagnosed issues to be addressed, etc. It is concise, formatted to be read easily, and I find most doctors are very appreciate of it. Along with that medical summary, I make a list of things to discuss during the appointment. Even if it’s something as simple as needing a prescription refill, it goes on the list because I am prone to forget. Prioritize items on your list by importance (I.e., discuss test results before asking for the prescription refill so you leave enough time for discussion about results). If you can, bring someone with you (for whatever reason, sometimes appointments go better with a loved one present). Don’t be afraid to ask questions or advocate for yourself, respectfully. I definitely second what others have said: speak honestly about the severity of your symptoms, and do not try to minimize them. Don’t be afraid to change doctors if you’ve had bad experiences. Most of us have had some bad experiences with doctors, ranging from doctors not being knowledgeable about our conditions enough to treat them, to malpractice. There ARE, however, phenomenal doctors out there, so don’t give up or become hopeless if you’ve had bad experiences! I have had some poor experiences with doctors, but my current team is amazing! The doctors I have now work with me to better my health in every way we can, and advocate for me. They are compassionate, caring, and educated about my conditions and medical history. Don’t give up hope!

Jess L- Don’t be afraid to speak up for yourself and be your own advocate. It’s ok to say no and to see a different healthcare provider. Write up a list of your medications, symptoms and questions. It gets difficult to recall and remember everything. Get copies of all of your test results so you have them and can share with other healthcare providers. I’ve found that doctors take me more seriously when I bring someone with me to my appointments. Since I have a complex case, many have tried to tell me it’s all in my head in the past because they couldn’t figure out how to help me.

Ginny R- Bringing someone with me is most important to me. My body does things so differently than most that it’s easy for healthcare professionals to see a pin cushion/science experiment/something to be studied. I make sure I always bring someone with me so that they have to see me as a mom, daughter, sister, wife, etc.

It seems like the most common suggestion is to document all of your symptoms and to bring someone with you to your appointments. That is really sound and reasonable advice. I hope that you all enjoyed this weeks Weigh In Wednesday Column and will come back next week to read about “Tips and Tricks to Make Shopping More Spoon Saving-Discounts on Spoons.”