Advocating For Yourself At The Doctor’s Office
The process of being diagnosed with a chronic health concern can often be lengthy and difficult. People with axial spondyloarthritis (AxSpA) frequently have a long journey between the time they first begin experiencing symptoms and when they receive a diagnosis. Despite having many of the symptoms, if patients lack the evidence of AxSpA on their X-rays, doctors will often delay giving an official diagnosis.
This can cause harm to the patient as you must wait longer to begin treating AxSpA and gaining control of your chronic illness in order to start feeling better. How do you get the doctor to listen and take your pain seriously? There are several things you can do to help advocate for yourself when walking into an appointment.1-3
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 an additional perspective on your symptoms to the doctor, serve as note-taker, or sit quietly to provide moral support. Go over everything you want to have addressed in the appointment with your buddy beforehand so they can help ensure nothing is forgotten in the midst of 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 AxSpA is impacting your daily life. Keep a record in whatever way makes most sense to you - a journal, spreadsheet, calendar, or an app on your phone where you can download and print the data before going to your appointment. 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.1-3
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 AxSpA. When keeping a log of your symptoms, also record questions you want to ask your doctor. Bring these along to your appointment to be sure you do not forget anything you want to discuss.1-3
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 foremost 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
Get a second opinion
If you are not being heard or feel your doctor is not taking your concerns seriously, you are always within your right to ask for a referral to another doctor or seek out another practitioner. No one doctor is the right match for every person. You deserve to have a doctor who will prioritize your health and well-being. Your doctor should be committed to making an accurate diagnosis and developing a treatment plan to help you manage your symptoms.1-3
Anytime you do not understand something, ask! Ask questions of the doctor or one of the nurses if something is unclear. Send a message through the hospital’s online charting system if that feels more comfortable or if you discover you have a question after the visit is over. Make sure you understand what is being recommended, what the assumptions are regarding your health and diagnosis at this point, what the treatment is, what the possible side-effects of a prescribed medication might be, and how to contact your doctor if you have further questions or complications.1-3
Can you tell when a flare is coming?