Managing Mental Health with an Autoimmune Disease

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 [1]. Additionally, Cleveland Clinic reports that clinical depression occurs in 40% of people with multiple sclerosis [2].

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:

• Unrelenting fear and worry about disease fluctuations, flare-ups, or declining health.

• Long-term inflammation and physical pain or discomfort. People living with chronic pain are four times more likely to experience depression or anxiety than those who are pain-free [3].

• Chemical and hormonal changes caused by certain autoimmune diseases.

• Cognitive burnout that is caused by spending too much time doing research related to your disease.

• Feeling worn down by doctor appointments that feel unproductive. When you have an invisible illness and your tests come back normal, it can be distressing because you might feel like you have to work harder to “prove” your symptoms to your doctor.

What you can do:

• Talk with people who validate your experiences. This can be a trusted friend, loved one, healthcare provider, or mental health professional. If you have the ability and the desire to talk with a professional, it can be beneficial to work with a therapist that specializes in chronic illness. Psychology Today has an online tool to help match you with a therapist who meets your needs.

• Consider joining a support group. Great support groups can offer a vibrant, judgement-free space to share support, build community, and connect with people who are going through similar experiences. Unsure how to find a support group? Check in with the organizations that support your disease. You might also consider joining The Global Autoimmune Institute’s Autoimmune Aware Support Group community. The group meets monthly and our virtual sessions are open to all. 

• Don’t try to do it all at once. Create boundaries to steer clear of cognitive burn-out. Each time you sit down to research your condition, set a specific window of time that you won’t exceed. You might also enlist friends and loved ones by asking them to help research specific topics for you [4].

• Take a moment to remind yourself that mental health struggles are nothing to be ashamed of. There is actually a great deal of courage and self-love in reaching out for help. Additionally, remind yourself that acceptance and healing are not linear. Be kind to yourself and remember that your bad days do not define you. 

• Small, daily practices can be powerful tools for managing mental health. Try to devote just a few moments of each day to pausing and taking a few deep breaths. Close your eyes, check in with your body, and notice any sensations or feelings that arise during these moments. Consider keeping a journal to jot down details or thoughts about your day, or to name a few things that you are grateful for. 

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: 

• Social isolation due to decreased mobility, low levels of energy, or frequent hospitalizations. 

• Avoiding others as a means to avoid being judged or having to explain your illness. 

• Anxiety around talking about your illness and explaining your accessibility needs or dietary restrictions. 

• Distancing yourself from others because you are tired of hearing hurtful comments or receiving unsolicited advice about your illness. 

What you can do: 

• Try your best not to isolate yourself. Come up with a list of activities that feel safe and feasible for you. Ask your friends, family, and members of your household to help you come up with ideas. On your toughest illness days, remember that you don’t have to be physically present in order to enjoy human connection. Try using a video calling app to stay connected with loved ones. Even something as simple as watching a movie with a friend via Facetime or Skype can be enormously comforting.

• If you are struggling with feeling like a burden, try to talk openly with your friends and loved ones about it. Having an honest conversation about your illness can be a huge relief. It can also encourage stronger communication and build deeper trust between you and your loved ones.

• When it comes to social situations, think ahead about how much information you feel comfortable sharing about your illness, dietary restrictions, accessibility needs, etc. You might even try writing a short script explaining your illness. This can help you feel confident and direct when talking about your disease.

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 [5]. 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:

• Trust your gut feelings during interactions with a doctor. Is this doctor listening and responding meaningfully to your concerns? Do they interrupt or talk over you? Do they reduce your experiences to anxiety or hypochondria? Do they appear knowledgeable about invisible disease symptoms like brain fog, chronic pain, fatigue, etc? Don’t be afraid to speak up if you are feeling dismissed or invalidated by your doctor. You are an expert when it comes to what you are experiencing in your own body and mind, so your voice should always be valued by your doctors. 

• Stand firm and remember that you are in control. As a patient, you have the power to do several things that can influence your healthcare experiences and outcomes. You have the ability to request a second opinion, ask to be referred to a specialist, or look elsewhere for a new doctor who is better at addressing your health needs. You can also educate yourself about available therapies, diagnostic testing, and various approaches to health. Stay curious and don’t be afraid to ask questions. You deserve to be listened to. These efforts may be stressful and tiring, but self-advocacy can have significant benefits when you’re not getting the care you need. 

• Collaborative, multidisciplinary care. Multidisciplinary care involves working with a variety of specialists to implement care for different aspects or symptoms of your illness. Academic centers, such as university hospitals, are set up to diagnose and treat more complex conditions, as medical professionals consult with each other and use their combined knowledge. Multidisciplinary care can include specialist doctors, nutritionists, psychologists, and many more. If you are not already working with multiple providers, talk to your primary care physician about what types of specialists might compliment your treatment. 

• Remember that the process of diagnosing and treating an autoimmune disease takes time. Every person’s experience with autoimmune disease is unique. As such, it is likely that your diagnosis and treatment journey will feel more like a marathon rather than a sprint. Try your best to let go of expectations about how long it “should” take to receive a diagnosis. Likewise, you might have to cycle through time and trials before finding a treatment protocol that works best for you. Do your best not to be discouraged by this process. If you feel like you have hit a wall with your health journey, communicate your feelings to your healthcare providers.

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!