Have you been told your autoimmune symptoms are all in your head?
If you are trying to obtain an autoimmune diagnosis the chances are high that you could be dismissed or told that what you are experiencing is in your head. In a 2020 study of individuals with lupus, 76% of individuals reported at least one misdiagnosis. Almost half of these misdiagnoses were attributed to mental health or non-organic causes.
It’s already challenging to live with autoimmune symptoms like extreme fatigue, pain, or brain fog. Then add medical gaslighting to that and it’s a very difficult road to accurate diagnosis. What should you do when you are concerned you’ve been misdiagnosed? What should you do when you experience medical gaslighting?
First, let’s look at signs of medical gaslighting from Creaky Joints:
The answers you receive don’t address your concerns.
Your doctor interrupts you or doesn’t listen to you.
You feel ashamed after telling your doctor about your symptoms.
You leave your appointment wondering if you are “imagining” your symptoms.
Your doctor blames you for your symptoms.
If you’ve ever experienced medical gaslighting, you know well the feelings of disempowerment that come with this dynamic. And you know that being gaslit does nothing to move you forward to an accurate diagnosis. Without accurate diagnosis, you can’t get the treatment you need.
Misdiagnosis in autoimmune disease, much like delayed diagnosis, can lead to your symptoms worsening in the short-term or irreparable damage to your body in the long-term. It might mean additional financial costs for unnecessary tests. You might experience anxiety or depression as you try to find a provider who listens. And ultimately, you might receive the wrong treatment.
If you’ve experienced medical gaslighting, how do you move forward from being dismissed or misdiagnosed? What steps can you take next?
Here are some fantastic tips abridged from Baton Rouge General:
If the doctor is being dismissive, respectfully push back. You are an equal partner in the doctor-patient relationship. Let them know you appreciate their expertise, but remind them that you are the expert on your own body. Partner to reach a diagnosis and treatment plan.
If you’re not being listened to, ask friends and family for a referral to another doctor. Find one who listens well and takes your concerns seriously.
Use the Folia app to track your symptoms. Track when your symptoms began, how often they occur, and what makes them worse so you can show your physician a record of what you are experiencing. The Folia app provides you with objective data, graphs, and reports on your symptoms that you can share with your doctor.
Bring someone you trust to your appointments to help you make your case.
Learn about autoimmune diseases from trusted sources, such as the Autoimmune Association.
Find a mental health therapist who specializes in working with patients with chronic or rare conditions. They can support you in the diagnosis journey and give you tools to advocate for yourself.
Our team has heard countless stories from the Folia user community about their experiences with medical gaslighting. Take heart because many of these individuals were able to advocate for themselves and get the diagnosis and treatment they needed. Some, like Katie, have used their Folia data to help their care team find an accurate diagnosis. “I’m learning that I have to stand up for myself. Some doctors have belittled me, denying the symptoms I experience. They conclude I’m not feeling what I’m feeling. If you’ve had a similar experience of not being heard, please remember: you know your own body. Stick with it.”