Advocating For Yourself With Doctors

Patients reporting feeling ignored or invisible when it comes to how their doctors treat them isn't news to the medical industry. Patients are often rushed in and out of the room, and sometimes they struggle to be believed. This is even more common when it comes to women and people of color.

Seeking a second opinion

While there are some diseases that you can outwardly see, like psoriasis, there are plenty of co-occurring symptoms you simply can’t. This might be pain or fatigue or anxiety, all of which are very valid.

It took me 10 years to finally be diagnosed with spondyloarthropathy. Only later on did I start experiencing psoriasis. The only reason I was ever on the road to a diagnosis with ankylosing spondylitis was that I experienced extreme eye pain and swelling. I was told for almost a year that it was contact irritation, despite the fact that it wasn’t going away and I wasn’t wearing contacts frequently.

When I finally saw a specialist, they hesitated to run bloodwork, saying that I was too young to really be sick. Finally, when I sought out a second opinion, they ran specific bloodwork for certain gene markers on me. It was only then that the possibility of a systemic disease became a reality.

Tips for advocating for yourself

I had to fight to be understood and to have the appropriate imaging and testing done. I had to fight to even get in to see my rheumatologist when I thought I started noticing psoriasis.

Here are my tips—after a decade of seeing doctors:

• Write everything down. Write down the symptoms, the dates, and anything you feel may have triggered the symptoms. Keep a book, and bring it to your appointments with you.
• If your doctor refuses bloodwork or imaging requests, ask your doctor to make a note of your complaint and that they didn't resolve it nor perform any additional checks. This usually gets them squirming.
• Bring print-outs (or a website on your phone) of anything you'd like to show the doctor. This may be a list of symptoms, a disease you think you want to be checked for, or updated facts about your disease or a treatment option. I've had to show doctors new research around treatment (yes, this is highly unfortunate).
• Bring questions to your appointment and have the doctor answer each. NO question is a bad question.
• Bring a pal to the appointment and have them take notes for you. Often, we get flustered at the doctors and forget to ask the right questions or retain the information.
• Ask your doctor to write a summarizing email explaining their thoughts and next steps or goals.
• Know when to push. Sometimes you have to listen to the doctor. You are not a doctor. You are a patient. But you do need to know when to assert yourself and when to listen.
• My best advice? Use your intuition.