Advocates of mental health awareness understand that care is a collaborative effort. An autoimmune disease or chronic illness journey often causes significant disruptions to one’s life and requires mental health support in addition to managing symptoms and treatments. 

A recent study that investigated the prevalence and identification of neuropsychiatric symptoms in systemic autoimmune rheumatic disease (SARD) patients found that 55% of patients suffered from depression, and 57% were struggling with anxiety (1). In another study from 2013, a group of Danish researchers concluded that participants with an autoimmune disease were 45% more likely to develop symptoms of anxiety or depression (2). 

Such studies highlight the emergent need for mental health support while also reflecting the gaps in the literature regarding neuropsychiatric symptoms. In the same study based on SARDs patients, clinicians reported that limited training in and knowledge of psychiatric manifestations affected their ability to assess their patient’s condition and provide adequate resources for them. 

So what’s next?

While there is no easy solution to managing mental health with autoimmune disease, there are a number of ways in which providers and patients can work together to center one’s mental health needs and sustain emotional well-being.

Living with an illness can be a deeply personal and often isolating experience, especially if the illness is invisible. Many feel stuck and worn down by doctor’s appointments and hospital visits. Additionally, symptoms of illness including cognitive burnout, chronic pain, and hormonal changes magnify feelings of worry, fear, anger, and grief. 

What you can do: 

• Daily practices. Ritualization can help foster a sense of control and balance in life. Start by engaging in small daily practices whether it is reading, cooking, meditating, or some other activity you enjoy doing or have always wanted to learn. For example, listening to podcasts is an easy task that can be incorporated into your daily ritual. We have a great list of podcasts on our website that share lived experiences of individuals with autoimmune diseases. They are wonderful sources of information on treatment, challenges, and well-being of individuals living with an autoimmune disease.  
• Journaling. Despite being one of the most commonly recommended practices, journaling daily can be daunting. It can feel like a chore when you don’t feel comfortable writing, feel obligated to write every day, or cannot put your feelings on paper. But journaling is an excellent form of record keeping. One of the hardest things to do is articulate your feelings and experiences on the spot at the doctor’s office or to a caregiver. Use journaling as a safe, self-paced space to sort your thoughts and words, which don’t necessarily have to be written. Journals can be records as voice notes on the phone, videos, or even art. 
• Trust your body and self. Know that as a patient, you are an active partner when it comes to seeking care for yourself. You have the ability to ask questions, request a second opinion, ask to be referred to a specialist, or look elsewhere. Don’t be afraid to advocate for yourself!
• Seek collaboration. Multidisciplinary care involves working with different specialists to implement care for different aspects of your illness. It can include specialist doctors, nutritionists, psychologists, and many more. Rather than working with one professional, talk to your primary care physician about what types of specialists might help with your treatment and work with them. 
• Find ways to validate your experiences. Validating your experience is sometimes necessary when living with an illness. It can be done by talking to caregivers, friends and healthcare providers, and engaging with stories that stories that are similar to your own. Consider even sharing your own story! You might find that your story speaks to someone else who is on a similar journey. Joining a support group can offer a judgment-free space to build community and connect with people. The Global Autoimmune Institute’s Autoimmune Aware Support Group community welcomes anyone who has an autoimmune disease, or chronic illness or is undiagnosed and awaiting their autoimmune diagnosis. This meeting meets monthly and is available virtually.
• Start small and take breaks. Creating healthy boundaries and taking breaks is crucial to caring for your mental health. Rather than spending hours on the internet looking for resources and researching about your condition involve your family and loved ones in the process. Have them help research specific topics and resources for you. 

As healthcare providers, investigating symptoms is the first step towards providing care. The limited availability and accuracy of objective testing and the invisibility of psychiatric symptoms can contribute to no diagnosis or misdiagnosis. In some cases, difficulties arising from the absence of clear terminology shared between physician and patient affect one’s ability to provide care and create room for mistrust. 

When a patient’s symptoms and calls for help are consistently dismissed as invisible and illusory, they may become reluctant to seek support and treatment.

Researchers from the University of Cambridge and King’s College London found that more than half of the patients rarely report their mental health symptoms to a clinician. They say that patients should be supported to share their symptoms without the fear of being stigmatized (3). By giving patients a chance to speak and actively involve their perspectives in treatment plans, clinicians can help empower them. 

Ask questions. Go beyond the traditional “How are you” and ask your patients questions to help you provide patient-centered care. Arthur Kleinman’s Eight Questions serve as an excellent explanatory model to understand the patient’s perception of their illness, the personal, social, and cultural meanings they attach to their illness, expectations for the future, and personal therapeutic goals. 

1. What do you call your illness? What name does it have?
2. What do you think caused your problem?
3. Why do you think it started when it did? 
4. What does your sickness do to you? How does it work?
5. How severe is it? Will it have a short or long course?
6. What do you fear most about your illness?
7. What are the chief problems that your sickness has caused for you?
8. What kind of treatment do you think you should receive? What are the most important results you hope to receive from treatment? 

Keep resources on hand. Whether in the form of informational pamphlets, contact information of organizations and support groups, or a list of books and guides that can make the prognosis less intimidating, having this material on hand would save a patient hours on the internet looking for information. 

Advocate. Doctors can also be advocates by urging effective multi-disciplinary work in hospital systems. Providing multi-disciplinary care for patients with autoimmune diseases can help cater to different symptoms of their illness. 

It’s important to remember that care is collaborative. Managing mental health involves patients and physicians meeting each other halfway. Looking beyond physical symptoms and test reports, recognizing different perspectives, and communicating are valuable to keep moving forward in one’s illness journey. 

Nayonika Chatterjee, MA, specializes in illness narratives and stories of healing. As a trained anthropologist, she has researched extensively on cancer and survivorship models practiced in India and US. As a writer, she is experienced in academic, fiction, and ethnofiction genres of writing. She is currently exploring how public-facing platforms can intersect with various forms of storytelling to inform perceptions and build communities.