The process of being diagnosed with a chronic health condition can be long and difficult. People with ATTR amyloidosis often have a lengthy journey between when they first begin experiencing symptoms and when they receive a diagnosis.
This may cause you to wait longer to begin treating your ATTR amyloidosis in order to start feeling better. So how do you get the doctor to listen and take your symptoms seriously? There are several things you can do to help advocate for yourself when walking into an appointment.
Bring a buddy
One of the best things you can do is to bring a friend or loved one with you to help advocate for you. Before the appointment, discuss with your buddy what you intend their role to be. They might help ask questions of the doctor, provide more perspective on your symptoms, serve as note-takers, or sit quietly to provide moral support.1-3
Go over everything you want to have addressed in the appointment with your buddy beforehand so they can help ensure nothing is forgotten during the visit.1-3
Record your symptoms
Keeping a log of the symptoms you experience and when they occur can help show your doctor just how seriously ATTR amyloidosis is affecting your daily life. Keep a record in whatever way makes the most sense to you – a journal, spreadsheet, calendar, or an app on your phone. You can download and print the info before going to your appointment.3
Bring this log with you, and have your doctor review it. The more evidence you have, the more likely it is your doctor will listen and seek to address your concerns.3
Be prepared
Spend time doing your own research and be able to talk confidently about what you know. Attending conferences or joining support groups can help you feel less alone in your symptoms and add to your knowledge of ATTR amyloidosis.1-3
When keeping a log of your symptoms, also record questions you want to ask your doctor. Bring these to your appointment to be sure you do not forget anything you want to discuss.1-3
Speak up
When faced with the lab coat and the fancy diplomas, it can be hard to speak up and assert yourself if your experience does not line up with your doctor’s perspective. Remember, you are the world’s best expert on you and your health. No one else lives inside your body. Make your point, again and again, if necessary, until you feel heard.1-3