The Importance of Empathy and Listening with Autoimmune Diseases

December 6, 2022by Mamta Kothiwale


The Importance of Empathy and Listening with Autoimmune Diseases

When living with an autoimmune disease, such as IBD and Lupus, people experience a level of uncertainty in their health and lifestyle. Change is ongoing from getting a clear diagnosis to understanding their condition and then learning to manage flare ups and symptoms. On top of this, patients can also find themselves exhausted, in pain, sleep deprived, and with a lack of clear thinking. Finding treatments that work, plus the diet, supplements and exercises that support them, is a process that unfolds over time. I

Having an autoimmune disease is a stressor itself. Its impact on mental health and the nervous system must also be considered. Patients can feel out of control when they don’t feel good physically and are unable to alleviate their symptoms. They may experience frustration or sadness from losing the lifestyle they enjoyed. Feelings of insecurity or shame over not being healthy and requiring help and resources to manage their care can be overwhelming. They might worry about the impact on their relationships, or even isolate while feeling disconnected from people who don’t understand what they are going through.

The key is for healthcare providers, loved ones, friends and colleagues to aim to understand the person’s experience and how they feel. To do this, it is important to practice empathy and good listening and communications skills. Empathy is the ability to imagine yourself in another person’s shoes experiencing their situation and feelings. Empathetic support and communications can go a long way in improving the patient’s satisfaction and quality of life.

Practicing empathy with patients being treated for autoimmune disease is relatively new and not yet widespread. Many patients don’t feel listened to by healthcare providers. The first step is to listen to patients talk about their symptoms and concerns. They want to be understood to help them cope with and adjust their changing needs. The healthcare team can help patients deal with uncertainties by listening, understanding and validating their suffering. While listening, they can also provide silence which gives patients the space to reflect and think for themselves.

The American College of Rheumatology addressed the “empathy of silence” at their 2019 annual meeting. Scientists have created qualitative and quantitative measurements for empathy. It has been demonstrated that highly empathetic practitioners can increase patient response rates. Patients who perceive care as more empathetic are likely to be more satisfied with the care and have lower stress.

Here are 5 ways to demonstrate empathy with people with autoimmune diseases:

  • Ask how the patient feels.  Have an approach of inquiry, saying “tell me more”, and then listen quietly each time the patient shares.
  • Validate the patient’s experience and accept how they feel without guilt or shame.  Saying “I believe you” without having them feel defensive, negative or needing to provide proof can be a real gift.
  • Provide professional and/or personal support. This may include helping them fulfill their dietary requirements while out of the house, supporting their need for mental health support, and accommodating their needs during social events. Saying “I support  you” lets them know they can enjoy their life while managing their condition.
  • Take time to be there for them. Living with an autoimmune disease can feel like an emotional roller coaster with good and bad days. While finding the strategies that enable them to manage their illness, they may have to deal with depression, anger, loneliness and more. Being part of their healing journey and saying “I care about  you and am here with you for the long-term” can make a significant impact.
  • Help them practice self-love. Reinforce that their life has value, meaning and importance despite their condition. Provide ways for them to care for and uplift themselves doing things they love, such as getting massages, listening to music, spending time in nature, etc.  Saying, “You are valuable. Let’s celebrate you” can help them open the door to increased self-love.

When people with autoimmune diseases are treated with empathy, allowed to have their emotions and are actively listened to, they can better face what they are going through with self-acceptance.  As important, they can learn to feel more empathy for themselves on their healing journey.