Medical Gaslighting: What Mesothelioma Patients Need to Know

Have you ever heard of medical or physician gaslighting? It’s only been fairly recently that I’ve known the correct meaning of this term. It’s a relatively new term getting more attention in the medical community. 

Medical gaslighting can be described as when a healthcare professional dismisses your symptoms, shows no concern for your feelings and discredits your complaints. It can be so subtle that you may not even realize when it happened to you. Now that I know what it is, I know what to look for and how to recognize it.

You may be wondering if medical gaslighting has ever happened to me. The answer is yes, many times. 

My Personal Experience With Medical Gaslighting as a Mesothelioma Patient

When I was first diagnosed with peritoneal mesothelioma, the physician who had given me the awful news was my OBGYN. I was then referred to an oncologist/hematologist, who I thought would give me the help and answers I needed. 

I was given this diagnosis of a rare cancer I hadn’t heard of before, and I was told that my prognosis was about 18 months. In my head, I was on the fast track, ready to get rocking and rolling with whatever drug or mesothelioma treatment I had to endure for a longer and better quality of life. 

At my first appointment with the oncologist, it was clear we weren’t on the same track. It felt like I was a balloon being deflated. 

The vibe was off. He didn’t seem enthusiastic about treatment plans. He didn’t have any treatment plans! 

My labs were a bit out of whack and while I was concerned about them, he wasn’t. I questioned him about specific results being too low or too high, and his response was, “Oh, that’s common!” 

I thought it was odd at the time, but didn’t know I was being gaslit. I know now this was red flag No. 1. At the time, like so many other patients would do, I continued to go to my appointments and the same thing would happen. 

Since then, I’ve discovered that women and people of color are more likely to experience medical gaslighting. Some say that the symptoms of women and people of color are less likely to be taken seriously.

When you’ve been diagnosed with mesothelioma or any cancer, time is of the essence. It’s crucial that your doctor has confidence in himself, respects you as a patient and has your best interest at heart. 

I found another oncologist who is a peritoneal mesothelioma specialist. He presented me with a clear treatment plan he’d had success with in similar cases. And, most importantly, he respected me as a patient. 

Recognizing Signs of Medical Gaslighting

While overwhelmed with the news of a mesothelioma diagnosis, it can be difficult to immediately pick up on medical gaslighting. We should be able to expect the highest quality care and respect as patients. There are some signs to watch out for when patients and caregivers are communicating with doctors.  

Signs of Medical Gaslighting

• Blame: Cancers such as mesothelioma are the result of asbestos exposure. You’re not to blame for developing this disease.
• Dismissive: Meeting descriptions of your symptoms with “Oh, that’s normal” or “Are you sure?” has happened to me and signals you’re not being taken seriously.
• Interrupting or not listening: If your physician doesn’t listen to you or interrupts you when you talk, it’s a sign of a bigger problem.
• Lack of empathy: Hearing about a bad test result is emotionally overwhelming. Having an emotionally disconnected physician who can’t offer empathy is a red flag.

It can be difficult in the moment to respond to medical gaslighting when it happens. There are some approaches that may help address it quickly. 

For example, if your doctor is not listening, ask them what their recommendation is based on what you described. This will probably prompt them to ask you to repeat what you just said. If your doctor interrupts you, politely pause and complete your sentence or say, “Please allow me to finish my statement. Thanks.”

5 Tips for Avoiding Medical Gaslighting 

In no way is gaslighting your fault if it happens to you. If you’re meeting a new healthcare provider for the first time and are nervous or have met a doctor before and felt like something may have been off, there are some things that may help set or adjust the tone of your appointment.

1. Advocate for yourself. 
2. Bring a list of your questions and symptoms to each appointment.
3. Keep detailed notes and records.
4. Prioritize your concerns.
5. Take a trusted friend or family member with you to all of your appointments.

We must empower ourselves to become better advocates for our health care. Waiting in the lobby to see the physician is sometimes longer than the time you get with the doctor. Please make the most of those minutes and spend them advocating for yourself!

Getting a Second Opinion

If you encounter medical gaslighting, one key step you can take to advocate for yourself is to get a second opinion. Finding a doctor you can trust can make a tremendous difference in your experience as a mesothelioma patient.

The Patient Advocates at The Mesothelioma Center, for example, are available every day to answer questions, listen and connect you with top doctors who specialize in mesothelioma. Equally as important, they can help you find a doctor who will take you seriously and develop the best treatment plan for you.

It’s important to remember it’s okay to look for another doctor. Being open to finding someone who makes you feel heard and respected can help set you on the best path to manage your mesothelioma and improve your overall health and wellness.