Mental health: it’s a discussion that our modern world is slowly beginning to embrace. Although there are many factors that can impact a person’s emotional balance, the interplay between mental health and autoimmune disease is a topic that should not be dismissed.
Mental health challenges are a common experience among people with autoimmune disease and other chronic illnesses. In 2013, a group of Danish researchers concluded that participants of their study were 45% more likely to develop anxiety or depression if they had an autoimmune disease . Additionally, Cleveland Clinic reports that clinical depression occurs in 40% of people with multiple sclerosis .
From social and emotional burdens to physical challenges, many people with autoimmune disease experience significant disruption to their lives. The need for mental health support often goes hand-in-hand with the importance of managing disease symptoms, and yet many treatment protocols lack emphasis on mental health support.
When it comes to managing mental health with autoimmune disease, there are no easy solutions. However, it is possible to find strength through building your support system and engaging in practices that help sustain your emotional well-being. There are also a number of ways that providers can center the mental health needs and challenges of autoimmune disease patients.
Many patients agree that mental health is not discussed enough in the context of autoimmune disease treatment. The emotional and mental dimensions of illness tend to be deeply personal, and can often feel isolating. Struggles with unprocessed worry, grief, fear, or anger are not unusual to those with chronic illness. Additionally, many people find themselves feeling stigmatized or alienated by the circumstances of their illness.
Other aspects of autoimmune disease that can impact mental health or trigger mood disorders such as anxiety or depression:
What you can do:
For many people, life changes significantly after developing an autoimmune disease or other chronic condition. The realities of coping with shifting disease symptoms, energy levels, and overall needs might leave you feeling like a burden to others.
Additionally, many people see their social options diminished as a result of their changing health and energy levels, which can be difficult to adapt to.
Other social challenges of autoimmune disease can include:
What you can do:
When it comes to mental health, our society has a major problem with mishandling this serious and complex topic. Even though many advocates are working towards better mental health outcomes, stigma is still deeply internalized—even within the medical community. As such, it is not uncommon for mental health issues to be overlooked or dismissed in the course of diagnosing or treating an autoimmune disease.
In some cases, signs of depression co-occurring with a chronic illness are missed by the treating physician. This relates to the fact that depression and conditions like autoimmune disease can share overlapping symptoms, such as fatigue, reduced concentration, and many others. Depression that is caused by a chronic illness is likely to exacerbate the symptoms of the disease, which can initiate a cycle of declining health and escalating flare-ups.
There is also the issue that invisible symptoms, such as fatigue, chronic pain, and brain fog are often undermined or completely dismissed by healthcare professionals. When a patient is constantly being told that they are exaggerating or fabricating their symptoms, they may become increasingly more reluctant to seek support and treatment. This type of harm is often referred to as medical gaslighting. Medical gaslighting can cause a person to question their own reality, or to begin normalizing serious physical and mental health concerns. Some folks might begin to downplay their own physical and mental experiences as a reaction to medical gaslighting.
It’s difficult to know exactly what percentage of chronic illness fighters experience medical gaslighting, but the damage is evident. A 1997 study found that 66% of myalgic encephalomyelitis patients felt that seeking a doctor’s care actually worsened their condition . Such experiences are a result of many different factors, including long-held biases and misconceptions around gender, pain, illness, drug dependency, and more. Medical gaslighting leads to significant treatment disparities. While these outcomes exist across all demographics, they are especially harmful to women and people of color [6, 7].
What you can do:
It’s important to remember that chronic illness treatment and managing mental health can involve many different pathways. If something isn’t working for you, it’s not an indication of failure. There is no playbook on how to cope with chronic illness, but there is a lot of value in small breakthroughs. Leaning into your support systems, communicating with your healthcare providers, and treating yourself with kindness are all signs of your incredible ability to keep moving forward.
One of our sources for this post was Sarah Ballou, PhD for The National Celiac Association. This fantastic discussion was recorded in a recent webinar, “All Things Celiac”. Visit The National Celiac Association on the web to view the entire video!
Skerrett, Patrick J. (2013). Infection, autoimmune disease linked to depression. Harvard Health Publishing.
Chronic Illness and Depression. (2021). Cleveland Clinic.
Chronic Pain and Mental Health. Mental Health America.
From the Experts: All Things Celiac. National Celiac Association, Harvard Medical School.
McManimen, S., McClellan, D., Stoothoff, J., Gleason, K., & Jason, L. (2019). Dismissing chronic illness: A qualitative analysis of negative health care experiences. Health Care Women Int, 241–258.
Gaslighting in women’s health: No, it’s not just in your head. (2021). Northwell Health, Katz Institute for Women’s Health.
Sabin, Janice A. (2020). How we fail black patients in pain. Association of Medical Colleges.