Autoimmune Diseases, Chronic Pain and Mental Health
By: Sharon Burris-Brown, LICSW, NBC-HWC
Kathleen Anderson, Licensed Professional Counselor and Certified Rehabilitation Counselor has a full case load these days and a waiting list as well. She is one of the therapists at Lyn Lake Psychotherapy and Wellness’ Lake Calhoun Office Building location, and her specialty is working with individuals who have chronic health conditions—many of whom who have autoimmune diseases and chronic pain.
As a case manager for 25 years for individuals with disabilities as well as being a patient, herself, with three autoimmune diseases, she has seen her clients’ struggles from both sides. “I am mostly in remission with my disorders”, Kathleen states, “but when I do have flare-ups, it is incapacitating”.
Autoimmune disease is an umbrella term describing disorders where the immune system is overactive and has begun to attack the body’s own tissues. Examples of common autoimmune diseases are: Rheumatoid Arthritis, Type 1 Diabetes, Crohn’s Disease, Multiple Sclerosis and Lupus.
Statistics
- The National Institutes of Health estimate that 23.5 million Americans suffer from autoimmune diseases and the amount is likely much higher.
- Researchers have identified 80-100 different autoimmune diseases.
- “Autoimmune diseases are often slow to be diagnosed”, Kathy explains. “Many of the symptoms are confusing and can be attributed to other illnesses” she adds. Indeed, according to an American Autoimmune Related Disease study, it takes on average over 4 years and about 5 doctors to get a diagnosis.
- Pain affects more Americans than diabetes, heart disease and cancer combined.
- Chronic pain is the most common cause of long-term disability.
- 78% of individuals with autoimmune disorder are women.
Challenges
Because many symptoms are vague and seemingly unrelated to each other, many doctors write these symptoms off as “it is all in your head”. According to the American Autoimmune Related Disease Association, a survey revealed that 45% of patients were labeled “chronic complainers” before diagnosis. Having had an experience of being discounted by a medical professional seems to be the rule rather than the exception. “Many times, when I get to people, they have provider fatigue and medical trauma”, explains Kathleen. This is on top of dealing with pain, often, severe limits on activities of daily life and the fear that no one and nothing can help them.
In addition, once an individual becomes ill with an autoimmune disease, she is much more likely to come down with others. Researchers don’t know why this is so, but there is evidence that some autoimmune diseases are “linked genetically and through environmental causes”.
The onset for many autoimmune disorders is between the age of 20-40–and at the peak of people’s lives and careers.
Connection Between Auto-Immune Disease, Pain, Toxic Stress and Trauma
Adverse Childhood Experiences have been studied at length in the past several years. ACES are traumatic experiences in childhood such as emotional, physical, sexual abuse, parental abandonment, having a parent who struggled with mental illness and/or substance abuse, poverty and homelessness, violence in the home.
Research shows a connection between an individual experiencing at least one adverse childhood experience (ACES) and an increased risk of being hospitalized with an autoimmune disease. In addition, the data shows that the risk goes up with in those individuals with more than one ACES. ACES are associated with decreased physical and emotional health over the course of the lifetime. One theory is that childhood stress can cause the body to have an inflammatory response. Illness may not show up until many years later.
Many people with autoimmune diseases also have chronic pain. Pain is information that something is wrong—either an injury or illness, but pain can become a disorder all on its own. And, it is common to struggle with depression and/or anxiety along with a pain condition. Trauma, toxic stress, illness and pain are tangled together in a Gordian knot that can cause a real sense of hopelessness in these individuals. And those who have gone through trauma are more vulnerable to pain becoming a chronic condition. Toxic stress can cause a prolonged stress response and the activation of an individual’s sympathetic nervous system, or the fight, flight, freeze response. Over time, the body responds with inflammation and a “sensitized response” to pain.
Treatment
Treatment for both chronic pain and autoimmune disorders needs to be approached from many different angles, Kathleen explains. These issues cannot be addressed simply by taking a pill or having surgery. The key is to help individuals see that they are not their illness and their “whole life does not need to revolve” around their disorder, she explains.
Kathleen describes a staged process of helping individuals with chronic conditions.
- At the beginning of treatment, she helps clients organize their treatment plan and to “empower them to ask questions” about their conditions, medications, and other treatments and side effects of any suggested treatments.
- Many times, individuals need help adjusting to their conditions, bumping up against their limitations but not giving up all their activities.
- And it is common for clients to come in with thought distortions such as: black and white thinking and catastrophizing. Often, clients have given up all the things that they love and give them purpose. One common example of a thought distortion Kathleen commonly sees is the idea that” if I could just stop hurting, I will be happy”. Or, “if I could just find that one specific treatment, I will be cured.”
- For those clients who have had emotional deprivation in their past, learning how to set boundaries, ask for help, carve out time for self-care and to develop self-compassion all are integral to the therapy and the healing process.
- In addition, Kathleen also “does a lot of psychoeducation” with her clients and their partners to understand the limitations their loved ones face.
- And as trust develops, over time, she will begin to address some of the deeper work of past trauma and family of origin issues that can cause major barriers to healing.
Chronic Illness can cause a crisis of faith: faith in oneself, the medical community and in any kind of spiritual belief system that an individual may have once had. Life purpose, passion and connection falls by the wayside and individuals who are challenged by chronic conditions can feel invisible and discounted. Learning how to advocate for oneself with family, friends and the treatment community as well as to continue living life with passion has everything to do with whether those individuals can realize their conditions are only one part of their lives or whether they allow these disorders to define them.
Articles
- https://www.aarda.org/news-information/statistics/
- https://www.aarda.org/wp-content/uploads/2017/04/tips_for_auto_diagnosis.pdf
- https://www.aarda.org/who-we-help/patients/women-and-autoimmunity/
- https://www.benaroyaresearch.org/blog/post/mystery-multiple-autoimmune-diseases
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3318917/
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4263906/
Books
- “Explain Pain” Butler, David and Moseley, Lorimer G.
- “How to Live Well with Chronic Pain and Illness”. Bernhard, Toni
- “You are Not Your Pain: Using Mindfulness to Relieve Pain, Reduce Stress, and Restore Well-Being—An Eight Week Program”. Burch, Vidyamala, Penman, Danny
- “All in My Head” Kamen, Paula
- “Mind over Mood, Second Edition: Change How You Feel by Changing the Way You Think”. Greenberger, PhD, Dennis, Padesky, PhD, Christine A., et al.
Resources
American Autoimmune Related diseases Association Inc. https://www.aarda.org
American Chronic Pain Association https://www.theacpa.org
National Association for Rare Diseases https://rarediseases.org
Courage Kenny Institute https://account.allinahealth.org/servicelines/815
International Myopain Association https://www.myopain.org
Sister Kenny Institute
Mental Health Systems (MHS) Thrive Program.