Auto-immune Disease and Mental Health

As a medical professional and the mother of a child with an autoimmune disorder, I have a unique perspective on the experience of having a potentially life-threatening illness.

My daughter, Scarlett, was diagnosed with systemic lupus erythematosus at the age of three. After spending four months in a Pediatric Intensive Care Unit, she was named the 2019 Children’s Miracle Network North Dakota Champion. We spent the year meeting families of children with chronic illness and cancer, which ignited my passion for spreading the word about the link between autoimmune diseases and mental health.

Autoimmune diseases occur when the body’s immune system, meant to fight germs, starts attacking the body’s own tissues. In addition to physical symptoms, this can affect thoughts and feelings. Neurological involvement has been found in many autoimmune diseases, leading to psychiatric symptoms such as anxiety, depression, cognitive dysfunction, and even psychosis. Genetic factors, the stress of the disease, and medication side effects can also lead to mental health conditions.

Although mental health symptoms can be seen in any autoimmune disease, people with the more common diseases like Lupus, Sjögren’s syndrome, multiple sclerosis, Celiac disease, and Graves’ disease are most likely to experience them. Symptoms, which include brain fog, fatigue, and mood changes, are often underreported and misdiagnosed, highlighting the need for care that addresses both physical and mental well-being.

If you or a loved one has been diagnosed with an AD, advocate for mental health care as a part of your treatment plan. Consider these tips for ensuring you or your child’s mental health is not overlooked.

1. Talk openly about mental health symptoms and concerns with doctors and school staff.
2. Keep a journal of mood, sleep, and other notable symptoms so you can spot patterns.
3. Ask your medical team about cognitive symptoms like memory and concentration so you can watch for them.
4. When prescribed a medication, ask how it might affect mood.
5. Find supportive services like counseling and support groups. Connecting with others who have similar experiences can provide comfort and practical tips.
6. Take mental health and cognitive symptoms just as seriously as you take physical symptoms.

Research in psychoneuroimmunology, the study of the connection between autoimmune disease and mental health, is evolving. I am hopeful that new discoveries will help health care professionals understand the effect of autoimmune disease on mental health so they can treat the whole patient.

People with autoimmune disease can live full and productive lives. My daughter is now 10 years old and in the fifth grade. She struggles with brain fog but is getting the help she needs at school. We are also a part of an online support group for children who have lupus. Being part of a supportive community is beneficial for both the child and the parents.

Reference: JR Ravan, S Chatterjee, P Singh, D Maikap, P Padhan. (2021) Autoimmune Rheumatic Diseases Masquerading as Psychiatric Disorders: A Case Series. Mediterranean Journal of Rheumatology, 32(2):164-167. doi:10.31138/mjr.32.2.164