Who Am I Now? Living With an Autoimmune Disease

Introduction

The presentation was told primarily through the Story of "Mary,"* a 26 year old woman who was diagnosed with systemic lupus erythematosus (lupus) four years after beginning psychotherapy. Although Mary has lupus, the issues relate to those with myositis as well, or any other autoimmune disease.

When a diagnosis of an autoimmune disease is made, there can be a flood of emotions. While there may be relief that there is something real to treat, there may also be feelings of tremendous loss of the person’s prior identity. Mary, for instance, did not walk out of her physician’s office the day of her diagnosis feeling like she was the same person who had walked in.

Thus, the question arises: “Who am I now?”

Similar issues arise for the treating therapist, who may now need to reevaluate the patient’s treatment plan and confront the crisis of identity that develops.

Autoimmune diseases: A brief overview

There are between 25 and 31 million Americans living with an autoimmune disease (a condition in which one’s immune system attacks healthy tissue), and approximately 80% of those are women, according to the Global Autoimmune Institute and the National Institutes of Health’s Office of Research on Women’s Health. Some of the more than 100 identified autoimmune diseases include myositis, lupus, rheumatoid arthritis, and Crohn’s disease.

These diseases are chronic (there is no cure), and the effectiveness of treatment is unpredictable. Though drug-induced remission may slow the progression of the disease, there may be mild to serious side effects.

Part of what can make diagnosis and treatment difficult is the wide variety of symptoms and multiple areas of the body that can be affected.

Diagnosis can take several years, especially when symptoms are not taken seriously and/or the patient is made to feel by his or her friends or family that the symptoms are all “in one’s head,” contributing to patients feeling uncertain about their own symptoms and questioning their knowledge about their own bodies.

During this lengthy process, the disease continues to cause damage and wreak havoc on the body, and may cause pain that can be debilitating. It is encouraging to note, however, that continued medical research, resulting in earlier diagnosis and treatment, has given patients hope in being able to lead fuller, more productive lives.

Living with an autoimmune disease: A social and emotional context

A common theme that emerges among people living with an autoimmune disease is the feeling of being alone with their illness. Many find that family and friends are available and supportive initially or when there is a crisis such as hospitalization, but that support fades over the long run.

It is important to remember that friends and family have also experienced the loss of their loved ones’ former self as he/she was known and may also become anxious and depressed.

The conflicting needs of the patient to find and accept a new sense of self – and those of loved ones to hold on to the one they once knew – can be a source of stress and tension in the relationship. This was illustrated in Mary’s story when her fiancée broke their engagement.

Many people with chronic autoimmune disease feel that there is a lack of understanding among those closest to them about their experiences and an unwillingness to learn more about their illness. This can create feelings of rejection, which can lead to increased feelings of isolation and loneliness.

Being diagnosed and living with an autoimmune disease affects our self-image and how we experience ourselves. Questions such as, “Who will want me now?” arise, particularly in younger, single people.

Feelings of low self-esteem, sadness, and even depression are commonly experienced by people living with autoimmune diseases, and some people may find psychotherapy helpful. In her work with Mary, Dr. Vitacco offered that at times she felt overwhelmed by the details of Mary’s illness and recognized that it was at these times that Mary was struggling to survive physically and emotionally.

As Dr. Vitacco said, “At these moments, Mary needed me just to listen to her, to be supportive, to help her anticipate and to organize, and to contain and hold the fear within myself that she could not bear at these times, regardless of how difficult this was to witness…hoping that by doing this, Mary would eventually be able to tolerate the emotions within herself.” It is important, for such reasons, to seek out professionals who can understand the particular issues of dealing with autoimmune and chronic diseases.

Dr. Vitacco asked the group to visualize the shattering of a complex puzzle and to imagine putting these pieces together again after they have fallen apart. This was a way to represent how one may experience the diagnosis of a chronic illness and then live one’s life with the disease.

Emotional trauma

According to Dr. Vitacco, when people are diagnosed with an autoimmune disease, they frequently experience emotional trauma which – in this context – is used to describe the “emotional and physical reactions that are experienced when one is confronted with an overwhelming external event, such as a disease diagnosis.”

She further states that trauma specialists have discussed how illnesses requiring intensive medical intervention or result in critical events can trigger flashbacks and unwanted memories of these experiences. Dr Vitacco stresses that it is very important to remember that many people who live with autoimmune diseases are able to maintain a positive self-image and to live their lives for periods of time with their disease taking a secondary position.

Dr. Vitacco further states that many of these people may experience flashback symptoms and describe great fear when their diseases flare. In her experience, she has found that patients are concerned about increasing physical dependency and reliance on others, hospitalization, the effectiveness of treatment, pain, finances, and the ability to support oneself and one’s family. The overriding fear is the loss of one’s independence and humanness.

Dr. Vitacco identified the following four factors that affect one’s self image when diagnosed with a chronic illness:

• Severity of the disease process
• Stage of life when diagnosed
• Personality and emotional health before becoming ill
• Social and emotional relationships and support systems

It may be necessary to consider taking a different career path. The effect(s) of being diagnosed at a young age is different from being diagnosed at retirement, for example, as issues of social security disability, forming intimate relationships, marriage, and having and caring for children are considered. If diagnosed at retirement, plans are altered and reconsidered based on the level of ability one has. This phase of the life cycle can bring into sharper focus the issues of mortality that we begin to face at this time, and priorities can be reevaluated.

The quality of our relationships are critical at this time. Mary’s collaborative relationship with the doctor, who provided her with her diagnosis, enabled her to feel empowered in living with lupus. And, although Mary’s relationship with her mother changed, a new and more mature relationship developed with her father.

Finally, Dr. Vitacco stated, “It’s ironic. While lupus stole her former life, it also provided Mary with new opportunities: the opportunity to begin to know and accept herself for all that she is and is not. But most importantly, the opportunity to develop new relationships in which perhaps for the first time she feels seen, accepted, and loved for who she truly is.”

*Names and any other identifying information have been changed to protect the patient's confidentiality.

About the support groups at HSS

Learn more about our free patient support and education groups for people with various autoimmune disorders:

LatinX IA support

Our LatinX Inflammatory Arthritis Support and Education Programs offer bilingual materials and events for members of the LatinX community who have inflammatory arthritis.

Lupus patient support

• Charla de Lupus (Lupus Chat)® provides a safe and comfortable space for teens and young adults with lupus, and their parents, to share their thoughts, issues and concerns related to managing their disease, along with education and other support.
• LANtern® (Lupus Asian Network) is the only national hospital-based bilingual support and education program dedicated to serving Asian Americans with lupus and their families.
• LupusLine® is the only national telephone peer support program offering one-to-one emotional support and education to people with lupus.
• The SLE Workshop Since 1985, this workshop for people with lupus, their families and friends, has provided expert clinical lectures followed by informal discussion and peer support. 

Myositis

The Myositis Support and Education Program, provides a forum where patients can meet one another to reduce isolation, enhance coping, and increase their understanding of the inflammatory myopathies (necrotizing myopathy, dermatomyositis, polymyositis, inclusion body myositis, and juvenile myositis).

Rheumatoid arthritis

• The Early RA Support and Education Program is designed for people who have been recently diagnosed with rheumatoid arthritis.
• Living with Rheumatoid Arthritis: Lecture, Lunch and Conversation provides education and support for people with moderate to severe rheumatoid arthritis, as well as their family members and friends.

Updated: 9/27/2024

Authors

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References

• Global Autoimmune Institute. Fact sheet on autoimmune disease and women’s health [Internet]. Reston (VA): Global Autoimmune Institute; 2024 May 24 [cited 2024 Sep 27]. Available from: https://www.autoimmuneinstitute.org/research_updates/fact-sheet-on-autoimmune-disease-and-womens-health/
• National Institutes of Health, Office of Research on Women’s Health. NIH fact sheets on women’s health research [Internet]. Bethesda (MD): National Institutes of Health; 2024 May 24. 44 p. [cited 2024 Sep 27]. Available from: https://orwh.od.nih.gov/sites/orwh/files/docs/NIH%20Fact%20Sheets%20on%20Womens%20Health%20Research_050924_508c.pdf.
   

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