Sometimes, when a person discovers we are a medical family, they begin to divulge all of their own medical dilemmas in great detail. Even if they are complete strangers. It’s just part of the role I guess.
This happened with our air conditioning repairman last summer. I emphasized to him how important it is to keep our home cold so our medically fragile child doesn’t overheat. This gave him the permission he needed to share the most intimate details of being diagnosed and treated for prostate cancer.
He showed us his laparoscopic scars and lamented about needing to wear Depends. It was TMI. But what he really wanted to express, more than his battle wounds, was his frustration over the process of being diagnosed and the process of recovery.
Healthcare is an ever-changing and complicated system to navigate
In recent years healthcare has become more of a business than a service, and therefore, you need to arm yourself with information. I’m not saying, Google your condition and come into the exam room ready to tell the doctor exactly how to diagnose and treat you.
However, in the middle of my conversation with the A/C guy, I realized that there are many things I’ve learned about having a medically fragile child that might be helpful to those who don’t go to the doctor as often as we do.
Before your doctor’s appointment:
Collect data before the appointment.
Doctors make decisions based on data, not feelings. This is coming from a highly feeling person who would prefer the doctor to find a way to treat my pleas for help in the midst of a medical crisis, then slow down, review my calendar and recount symptoms, but most doctors don’t operate that way. What I’ve found is that doctors are far more likely to read and analyze pages of a food diary, an output log, or any other concerning symptoms that are recorded on paper or in a spreadsheet. Your doctor will listen more to your data than your feelings.
Make a list of three issues per doctor’s appointment.
Any more than three complaints are going to overwhelm the provider and you will likely get rushed through the remainder of your appointment. Therefore, prioritize and pick the three most critical symptoms you need to address. The lesser ones can sometimes be answered by a phone call with the doctor’s nurse. Have the staff be the one to query the doctor on your behalf. You’ll sometimes get a more thoughtful response that way anyway.
Decide how you are going to take down information.
You are going to want to remember what you discussed during the appointment, especially, if this is a new issue or an overwhelming problem. The easiest way is to take notes in a journal or on your phone. Another is to bring a buddy. If you do bring a friend they can help you remember what was said. And if you want to audio-record the conversation, make sure you get the provider’s permission in advance. I personally have never recorded a conversation because I feel it hinders trust in the doctor-patient relationship. I have, however, asked for the physician to reexplain something or spell an unknown word so I can take accurate notes.
You have rights to your own (or your child’s) medical records.
You will make more informed decisions about your healthcare if you get copies of test results, scans, and reports. This is why I prefer going to an imaging center rather than a hospital for ultrasounds, MRIs, x-rays, things like that. Typically imaging centers are able to get you the information quickly. You simply ask the front desk staff for a CD of images and for the report to be emailed. You will get that information, sometimes the same day, but most definitely within 2 or 3 days. Knowing the results ahead of your follow-up appointment with your doctor helps you ask better questions, research how you would prefer to treat the problem and overall better partner with your provider.
Finally, plan to do something fun afterward.
Visiting the doctor can be stressful, and if not stressful, certainly not a welcome part of your day. Therefore, make time to do something you enjoy afterward. As you browse your favorite store, grab a coffee, or work out — whatever that fun thing is for you — you’ll feel like a person again. It will clear your mind and your heart for the changes you may need to make to care for your body better.
Doctors are amazing community helpers, but they don’t know everything. You know you. You know your child. Your job is to find the right doctor to partner with you, or your child, on your health journey.
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!