How Not to Be Dismissed as a 20-Something Female with RA (Part 2)

Recently, I wrote about my personal experience of being diagnosed with rheumatoid arthritis. While I began displaying concerning symptoms during my childhood, I was not taken seriously by a physician until after I was diagnosed with another autoimmune condition - Crohn’s disease.

Ignored by many doctors

My path to Crohn’s diagnosis was long, complicated, and disastrous at best. It challenged my mental health almost more than my physical health.

Years after establishing a relationship with a gastroenterologist, being correctly identified as living with Crohn’s disease, and starting on treatment to manage my actual symptoms, I opened up about some of the other symptoms I’d been living with outside of my GI distress. I was struggling with migraines, insomnia, and sometimes crippling joint pain and swelling. But, none of my other doctors had given me referrals or done anything to help diagnose or treat these other conditions.

You may find yourself asking, “Why is that, Amanda?”

Here’s what I’ve come to understand.

Was I dismissed due to my age and gender?

When I began presenting frequently and urgently to doctors' offices and hospitals, I was already being plagued by symptoms so severe that I wasn’t sure I’d survive them. From being chained to the toilet to being literally unable to walk, I was in rough shape.

I was also 23 years old. Female. And living in a major metropolitan area.

“You didn’t look sick”

Most of the physicians and medical professionals I interacted with were men. Regardless of their age, they all had one thing in common. They took one look at me, someone who “didn’t look sick” from the outside and decided to seal my fate. The care that they’d proceed to give me was based on incorrect opinions and assumptions. In short, I was dismissed.

My pain was dismissed.

I was treated like a hypochondriac.

My credibility was questioned.

My education and knowledge were questioned.

My confidence was shattered.

My voice was minimized.

And my hope was destroyed.

In retrospect, I can’t believe I didn’t stand up for myself and get angry faster. But, to be honest, I was weak, sick as a dog, extremely discouraged, and more devastated than mad.

5 tips to make doctors listen to you

Today, I am a fierce patient advocate living with Crohn’s disease, rheumatoid arthritis, migraines, insomnia and infertility. When I did find my voice again, I started to shout. I felt so adamant that other patients, especially other young females, learn how to handle and even prevent being dismissed by their doctors and care teams. Here’s what I can recommend:

1. Log your symptoms

Use an app or a journal. If you show up to an appointment with written information, spanning a period of time, it shows that you’re not only serious but also focused and paying attention. It indicates that you’re noticing patterns, that you’re in tune with your body and whatever’s been happening to it, and that you’re ready for advice. If you feel sick or flustered during your appointment, having pre-written your symptoms and questions will help you follow a script in ensuring you cover everything you need to while your doctor is with you.

2. Educate yourself on the disease

If you are living with a diagnosis like rheumatoid arthritis, educate yourself on the disease, the symptoms, the treatment options, and the prognosis. Include some of that knowledge in your conversations with your doctor. When they understand they are talking to an informed patient, their tone will change. I find that sometimes they lose some of the condescending tones.

3. Ask specific questions

Ask specific questions, such as “What might this symptom mean?” or “What do you recommend if this symptom gets worse?”

4. Have an advocate

Whether it’s a parent, friend, partner, or professional, attending appointments or preparing for and debriefing after appointments with someone else can ensure you’re confident in what you need to discuss and how to do so, that you can articulate your challenges even when your rushed or upset, and that if you struggle, someone else can step in to grab your hand and support you.

5. Find a second (or third, or fourth) opinion

Just because a doctor is reputable or you know someone who has liked them, it doesn’t mean they are the right fit for you or your health needs. And, if they make you feel bad about yourself or why you’re in their office, definitely don’t go back to see them again.

If you’ve been dismissed by a doctor before, how did you manage? How did you prevent that from happening again?