Meeting a new medical provider/doctor
Meeting a new medical provider can be stressful. Being prepared may be the difference between having a good or bad experience. We’ve put together some tips to help you be prepared and communicate effectively in the exam room.
- Source a good GP / PCP. Ask around your area who is considered good.
The pharmacy might be able to suggest also. A Primary care provider can help manage specialist care and be there for you in emergencies.
- Schedule a long appointment.
- Put together your medical history and prepare it in easy to read format.
Headings and bullet points, starting with your most recent history with dates, and listing down from there. Include any relevant family history (mother, father, siblings, etc.)
- Make lists of all your diagnoses, allergies, medications and surgeries
- Take a friend, family, or fellow Addison patient with you.
Having someone with you can help you stay focused. They can also take over and speak up for you if you get overwhelmed. Take a few minutes before the appointment to go over the main points you need to make in the exam room. Have a signal between you so your friend knows when you need help.
- Educate yourself as much as possible about your disease.
Knowledge about your illness will tell you if the doctor is basing their recommendations on current information. Don’t be afraid to challenge them, this is your life. Arm yourself with one or two credible documents to make your main points. For example, if you need an emergency injection kit, take a paper saying every AI patient should have one. Too many papers at once can overwhelm a physician, so keeping it to a minimum is a good start. Go to your support groups or national organizations and find the accredited information available for patients to print out and share with medical providers.
- Finding the right balance of standing up for yourself while maintaining an atmosphere of respect is a challenge.
Many of us have experienced the revolving door of poorly educated physicians. It can be hard to let that go. Starting fresh, with a new doctor is an opportunity to create a working relationship. Tone of voice and approach are important. Open the discussion with “I want to find a doctor who can work with me to manage my disease as I understand I am a complex patient. I’m educated about my illness and I know my own body. If you don’t know about adrenal insufficiency, but are willing to learn and work with me, I would be very happy to start there.” - Ask your doctor to provide you with an Ambulance Directive/Crisis Plan.
This is a letter from your doctor with specific instructions for the ambulance and emergency department in case you have an adrenal crisis. You can find three international versions here. https://aiunited.org/emergency-instructions/
- Be sure to get an emergency injection kit prescription from your doctor
(Solu Cortef Act-o-Vials or Dexamethasone with syringes, 3ml, 23-gauge x 1″ or 1 1/2″)
DO NOT take NO for an answer. You must insist on having this and know how to use it, and teach those around you how to use it. A crisis can happen suddenly. You may be shaky or confused and find it difficult to administer. You must know when to inject and be prepared to act quickly. Educate yourself and those around you about when and how to use it. There are many videos with instructions on injecting emergency hydrocortisone. All AI patients must carry an emergency injection kit, wear a medical alert bracelet, and a steroid dependent card. Here’s a very clear paper stating this in the first paragraph. http://www.eje-online.org/content/172/3/R115.full
- Last, but not least, give yourself a break when it’s over, you’ve earned it.