My lupus requires me to see many doctors and specialists: rheumatologist, neurologist, nephrologist, primary care, ophthalmologist, infusion nurse, neuro-radiologist, and neurosurgeon. (I think that’s all.) I have spent countless hours in doctors’ offices, waiting and exam rooms. I’ve made lots of mistakes (wasting both the doctor’s and my time) and learned some tricks to help navigate the medical world. Since my diagnosis, I’ve learned how to be a better patient. Here are eight tidbits of advice that I think are worth sharing.
- Make a list of questions you have beforehand and take it with you to the appointment. Yes, I’m embarrassed to admit that I have forgotten my list.
- Bring a pen. (If you forget your list, like me, you can quickly recreate it in the waiting room.) Please don’t use “community pens”, especially during flu season. When you check in at the front desk of your doctor’s office, imagine all the times that communal pen has been used and where all of those hands have been. Ewwwww. Double ewwwww.
- Take a list of all of your medications. There are many apps to help with this.
- Have an advocate come with you to your appointment. An ideal advocate is someone who will stand up for you, but more importantly will stay silent and remember everything discussed. You don’t want an advocate who will hijack your appointment, taking over the discussion with the doctor, leaving you shivering in your lovely paper towel dress. You want someone who will back you up. I find doctors to be intimidating, especially when I’m meeting a doctor for the 1st time. Having an advocate comforts me and reduces my anxiety. Afterwards, an advocate can help you remember what the doctor spoke about and recommended. Doctor appointments can be emotionally charged and stressful events, so it’s understandable to not retain all that was discussed, compounded by our lupus foggy brains.
- Take notes during the appointment. With my lupus brain fog, memory has become an occasional luxury.
- Don’t be afraid to recommend treatments or medications. Speak up for goodness sake. It’s your body. It’s your life. In order to avoid coming across as bossy or arrogant, I will phrase my recommendation in the form of a question. For example, I might say, “What about the new medication that cures everything called Keepdreaming. Have you heard anything about that?”
Remember that you are paying the doctor. Well maybe your insurance pays the doctor, but you pay your monthly insurance premium. Essentially, the doctor works for you. - One of the best tidbits of advice came from my mom, (Hi Mom), when she said, ‘you have to be your own doctor nowadays’. I totally get what she means. Mom is not saying that I need to diagnose and treat myself. She’s saying that you need to be proactive in your care: Sometimes you have to coordinate communication between your doctors and specialists; get copies of all test/lab results and make sure your doctors get this information, as well; and most importantly, take charge of your healthcare and your treatment.
- Include your doctor in your holiday card and/or gift giving. Show a small gesture of appreciation. If you acknowledge your hair stylist, mail carrier, or other folks during the holidays, you should definitely include your doctor. Doctors help you on the most personal level. I wouldn’t give a gift over $25 for ethical reasons. You don’t want to appear as if you are bribing the doctor with a lavish gift, so keep it small. A simple card with a heartfelt note is unquestionably appreciated. A little thank you note goes a long way.
Being a better patient means better care for you by creating a better connection with your health care team through openness and communication. Be a better patient and be a healthier, happier, less stressed you because you’re worth it.