Medical Gaslighting & Chronic Illness: Advocating for Yourself at the Doctor

by Erika Calcagno, MS, MHC-LP

Have you been told:

“You don’t look sick.”
“You are too young to be sick.”
“All labs are normal, nothing is wrong.”
Have you ever been told that your symptoms are due to stress or anxiety?
Or that losing weight is the answer to all your problems?

If you have heard any of the above, you are not alone. Whether you are someone newly diagnosed, diagnosed for years, or trying to get answers, I hope this article is validating, supportive, and provides some options and hope for you.

Medical gaslighting occurs when a medical professional minimizes and dismisses the concerns of an individual. In these gaslighting situations, instead of pursuing an investigation into the individual’s symptoms, the medical professional doesn’t actively listen and they may even talk down to the patient, attributing their symptoms to anxiety/stress, weight, or something mundane. This can make you question everything you are experiencing.

Too many individuals, especially women, experience this invalidation when living with a chronic illness. Not only does it occur from people we encounter in our everyday lives, even those who claim to care about us; it can also come from the very medical professionals who went to school to help us. In situations of medical gaslighting, professionals may give you unsolicited advice that is not based on medical fact, which can invalidate your pain, your symptoms, your life. It can be exhausting, lonely, and just plain frustrating.

In medical gaslighting situations, you may feel let down by the doctors that you choose to trust with your health. According to research, on average it takes women 4 years to receive a proper diagnosis for their chronic illness, waiting longer than men to receive a diagnosis*. This time can be greater for those in low-income or other marginalized communities. Individuals who are struggling with chronic illness and/or pain, often already trying to cope with feelings of anxiety, uncertainty, and worry, are also in positions to have to fight for proper testing, fight to be seen, and fight to be heard and listened to. It can be such an incredibly difficult battle - I hope that this post helps you to know that it is a battle you are not alone in. 

Advocating for yourself at the doctor can seem daunting and exhausting, but you don’t have to feel alone in it. Your fears and concerns are valid. Finding ways to advocate within this system is key. There is hope in finding the right medical professional, one that will make you feel heard and believed, and one that will fight with you to find answers and develop a treatment path with you.

Here are some tips to find that medical professional who is right for you and your chronic illness journey:

1- Follow your Gut - You are the expert on your body and the symptoms and/or pain you are experiencing. If you feel that something is wrong, trust in yourself. Even when a doctor tells you that your blood-work looks normal, review the results in detail with them and advocate for further testing. If you feel in your gut that this is not the right medical professional for you, you have the right to seek a different professional or get a second opinion.
2- Ask Questions - You can never have too much information. If you want to know why tests are being run or why they are not, ask your doctor to justify it. You deserve to know what is going and have a say in your own treatment. You can ask them to share the reason that they documented for their medical recommendation.
3- You can say ‘NO’ - This pertains to the treatment options given to you, the procedures and tests, and the behavior of your medical professional. A relationship with a medical professional in which you feel brushed off or talked down to is not a healthy one. They are supposed to be working with you, as part of a team. If they are not incorporating you into your own care, you are allowed to say no. 
4- Have a support network - It can be helpful to lean on supports in your life to help advocate for you and demand fair and just medical treatment. These can include friends, partners, family members, and even nurses and support staff in clinics and hospitals. You may find out that someone close to you has had a similar experience, or gain a recommendation for a professional who may be a better fit for you. Support groups in person or online can also be a helpful tool to connect to others who have similar experiences and are working to advocate for themselves.

Note: If you feel that a doctor or medical professional has discriminated against you or has done something unethical, you have the right to reach out to and make a report with your state's health department.

Getting control of your flare ups, searching for a diagnosis, and experimenting with treatments is a taxing journey. Dealing with medical gaslighting makes the journey even more exhausting and difficult, and can stir up feelings of stress, anxiety, depression, and shame. If you are searching for support to work with your medical team or to help with your mental health as you navigate the complexities of having a chronic illness, please don’t hesitate to reach out for support from clinicians at Healing and Growth Counseling. We are here for you!

Sources: Merone, L., Tsey, K., Russell, D., Daltry, A., & Nagle, C. (2022). Self-Reported Time to Diagnosis and Proportions of Rediagnosis in Female Patients with Chronic Conditions in Australia: A Cross-sectional Survey. Women's health reports (New Rochelle, N.Y.), 3(1), 749–758. https://doi.org/10.1089/whr.2022.0040

Author

This blog was written by Erika Calcagno, MS, MHC-LP, a clinician at Healing & Growth Counseling. Her passion for working with people with chronic illness and pain shines through her work with clients and in her writing on this very topic. Erika, herself, has been on her own chronic illness journey for the past 7 years. When she is not in session she enjoys playing with her two cats and traveling, focusing on the many types of foods other cultures have to offer. Erika currently has appointments available for online therapy. If you’d like to read more about Erika, check out her bio page here. If you are interested in scheduling an appointment with Erika, submit a form on our Contact page.

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