The Intersection of Autoimmune Disease and Social Work: An Effective Partnership for Health

by Casey Hersch, MSW, LCSW

     The American Autoimmune Related Diseases Association, Inc., estimates as many as fifty million Americans suffer from autoimmune related diseases; 80 to 100 diseases fit into these categories (2018). Social workers offer services in diverse community sectors such as schools, mental health agencies, hospitals and medical clinics, nonprofits, and private practices. Clients are not often referred for mental health services following a diagnosis of autoimmune disease. It is more common that social workers will learn of other stressors—such as a diagnosis of autoimmune disease—through assessment or ongoing interactions with their clients.  Autoimmune disease may not come up in conversation, as clients can be unclear about how their illness overlaps with mental health. They may not see how a social worker can help. As an LCSW who lives with Crohn’s disease—an autoimmune disease also known as Inflammatory Bowel Disease—I learned the nuances in treatment from my own personal experiences. Social workers are an integral part of the treatment team and contribute significantly to helping patients manage symptoms and heal. Therefore, understanding how to approach these patients in an ethical and diligent manner is critical.

What Is Autoimmune Disease?

    Our immune system is supposed to protect us from disease and infection. However, in the case of autoimmune disease, the immune system loses its ability to distinguish foreign invaders from the body’s own self. It sees its own tissues, healthy cells, and gut microbes as a threat, and the confused immune system attacks its own body.

    Some common autoimmune diseases include:

• Fibromyalgia
• Rheumatoid arthritis
• Endometriosis
• Lyme disease (chronic)
• Lupus
• Sjögren’s syndrome

Common Physical Aspects of Autoimmune Disease

    Many patients who have autoimmune disease experience chronic distress as evidenced by common symptoms: fatigue, joint pain and swelling, skin problems, abdominal pain or digestive issues, recurring fever, and swollen glands (Orbai, 2018). The distressing symptoms are compounded by unpredictable relapses and remissions. It is not unusual for patients suffering from autoimmune disease to have sensitivities to food, chemicals, and environmental triggers. University of Virginia rheumatologist Angela Crowley, MD, describes how autoimmune diseases can present with common symptoms, such as joint pain, alone or in combination with common symptoms overlapping other diseases. Because autoimmune disease can mimic dozens of diseases, it is important to view each patient as “unique” in their presentation of symptoms—no one patient will look the same as another patient with the same condition. This makes diagnosis challenging (Marshall, 2014).

    At the root of autoimmune disease is inflammation (Hyman, 2010). Most of us can recall being bitten by a mosquito; the swelling that results is obvious. Inflammation is a natural response by the body to protect itself from a foreign invader (in this case, the mosquito bite). The area of the bite is flooded with immune cells mounting their attack on the invader, and you can see swelling, redness, and feel heat or pain. Similarly, in autoimmune disease, the body attacks its own tissues, mounting an inflammatory response. This inflammation can have a negative impact on organs and lead to a variety of symptoms.

Common Emotional Aspects of Autoimmune Disease

    Historically, the medical model has separated physical and emotional symptoms and healing strategies. However, it is erroneous to assume symptoms are merely physical. Physical symptoms almost always have an emotional component and vice versa. Just as positive emotions can enhance well-being, negative emotions can contribute to depressed immune systems, inflammation, and illness (Weinberg, 2018). Patients with autoimmune disease can present with a variety of emotional challenges. As the body becomes a source of pain, it is common to develop a detached relationship with one’s body and self. This loss of bodily connection is compounded for patients with a trauma history, who are all too familiar with detaching or dissociating from themselves to cope with painful memories or in response to threats for survival. This calls for an emphasis on mind-body connection as a way to treat the whole person and manage symptoms.

    Living with chronic illness often results in feelings of low self-worth. Patients describe wanting their “old” selves back or “not knowing who I am anymore.” They may also express concerns that they are “becoming the disease.” Trauma compounds this loss of identity when there is a lack of safety expressing and being who they are. Cognitive dissonance peaks as patients may wish they could die just to stop the pain and discomfort of living in their bodies. This can be alarming to patients and supportive loved ones who don’t understand that there is a difference between imminent suicide risk and fantasizing about temporarily leaving one’s body to be pain-free.

    We respond to stress in individual ways. Flare-ups are common with autoimmune disease and can be unpredictable and attributed to many causes. The unpredictability, alone, can cause stress, as patients can be stable one day and the next unable to get out of bed. Perceived stress is one factor contributing to flare-ups and the subsequent inflammatory responses. Many patients come to us with a history of trauma. Trauma and triggers to traumas can cause the body to mount its threat response system—fight-or-flight. When this system is activated, the hormone cortisol pumps through the body. When this system gets overloaded, an increase in inflammation can occur.

The Social Worker's Role in Working With Patients With Autoimmune Disease

    Social workers need to collaborate with patients to create treatment goals that prioritize helping them understand how stress affects inflammation in their bodies. Making plans to reduce the impact of trauma and day-to-day lifestyle stressors on the body can be life changing.  

    Social workers can help patients reconnect to their bodies by helping them become aware of their bodily sensations and discussing the reasons why they may have “lost touch” with connection to their bodies. By encouraging strategies that will enhance body attunement—such as relaxation exercises, ballroom dancing, and yoga—social workers can help patients learn essential skills to cope with autoimmune disease.

    Helping patients integrate their physical and emotional selves can be achieved by understanding how emotions may influence physical symptoms. As patients expand awareness of their thoughts throughout the day and replace negative self-talk with positive self-talk, they begin to see how they can positively influence symptoms by shifting their emotional state.  Social workers can provide much relief by helping to dispel erroneous stereotypes (the symptoms are “all in your head”).  

    Patients with autoimmune disease have seen many physicians and are used to physicians being experts on their own bodies. They can be offered conflicting recommendations and faced with difficult decisions that can leave them confused—even immobilized. Social workers can offer a safe environment for patients to assume the expert role on their bodies and take charge of their treatment. Asking patients to educate you on autoimmune disease and what helps their condition values client self-determination (NASW, 2018). Encouraging self-advocacy is an important step in helping patients navigate barriers and fulfill individual needs.

    Patients live in complex systems interacting and influencing each other (family, workplace, physicians, hospitals, insurance companies, debt collectors). Emphasizing an integration of these systems allows for synergistic healing through collaborative treatment approaches. Additionally, identifying the systems influencing patients allows social workers to maximize strengths and to highlight how past successes contribute to resiliency.

    In conclusion, as the prevalence of autoimmune disease increases, the number of patients who will seek our support for these issues increases. It is important to remember that autoimmune diseases involve a combination of the mind and body.

    The relational aspect of social work is the essence of what makes our profession so transformative. Never undervalue the importance of the relationship you establish with your patient. It is often less about what you “do” in a session and more about “being” with the patient and allowing them to feel safe, normal, heard, and not judged. This can reduce stress levels in significant ways and reduce the negative impact of trauma. Showing your patients that illness doesn’t define who they are and how you see them goes a long way in treatment. We have much to offer our patients if we can help them establish integrative models for their healing and if we support them in using their own strengths to do so.  

References

American Autoimmune Related Diseases Association, Inc. (2018). Autoimmune disease statistics. Retrieved from https://www.aarda.org/news-information/statistics/

Hyman, M. (2010, July 30). How to stop attacking yourself: 9 steps to heal autoimmune disease.  Retrieved from https://drhyman.com/blog/2010/07/30/how-to-stop-attacking-yourself-9-steps-to-heal-autoimmune-disease/

Marshall, A. (2014, October 31). The detective work of autoimmune disease. University of Virginia Health System. Retrieved from https://blog.uvahealth.com/2014/10/31/detective-work-autoimmune-disease/

National Association of Social Workers (NASW). (2018). Code of ethics. Retrieved from https://www.socialworkers.org/About/Ethics/Code-of-Ethics/Code-of-Ethics-English

Orbai, A. (2018). What are common symptoms of autoimmune disease? Healthy Woman. Retrieved from https://www.hopkinsmedicine.org/health/healthy-woman/conditions/what-are-common-symptoms-of-autoimmune-disease

Weinberg, J. (2018). Mind-body connection: Understanding the psycho-emotional roots of disease. The Chopra Center. Retrieved from https://chopra.com/articles/mind-body-connection-understanding-the-psycho-emotional-roots-of-disease

Casey Hersch is a licensed clinical social worker and author. She specializes in autoimmune disease, trauma, and integrative approaches to healing. She is passionate about empowering others to connect the dots of their own lives, offering hope. Her book, pending publication, chronicles her mind-body-spirit approach to illness and trauma. For more information, visit http://www.lightyoursparkle.life