The National Institutes of Health estimate that as many as 22 million individuals in the United States have an autoimmune disease; over two-thirds of them are women. Autoimmune diseases are a diverse group of illnesses that share one key feature--the body views part of itself as a foreign substance and launches an attack on this tissue or organ. Cells within the body’s immune system, which are designed to protect the body from bacteria and viruses, carry out the attack. Researchers are still determining why women are more likely to have an autoimmune disease, but one explanation may have to do with sex differences in how the immune system responds to threats, as well as the different effects of hormones like estrogen, progesterone, and testosterone.
The nature of the autoimmune attacks varies across the autoimmune diseases. For example, in an autoimmune disease like multiple sclerosis (MS), the immune system attacks a specific substance--the protective coating (myelin) of nerve cells in the brain, spinal cord and optic nerve. In contrast, multiple cells and tissues (skin, joints, heart, and kidneys) can be attacked in the body of a woman with systemic lupus erythematosus (SLE). If a woman has one autoimmune illness, she has a higher risk of developing another over time (some women with SLE also develop rheumatoid arthritis [RA]).
What are the Symptoms of Autoimmune Diseases?
An extremely wide range of symptoms are associated with the autoimmune diseases. The symptoms vary by disease, within the same disease, and even over time in the same person. The list is too long to include in this brochure, but some are minor and annoying (skin rash; fleeting facial numbness), while others are more serious and debilitating (painful, swollen joints; paralysis in a limb), and others ultimately fatal (kidney failure, heart disease). Many symptoms are not seen, and thus are “invisible” to those not close to the woman with the illness, such as fatigue or difficulty concentrating. Women with an autoimmune disease may report that people are unaware of the impact of the illness upon them, sometimes telling her, “but you look so good.”
In addition to the numerous physical symptoms, many women with autoimmune illnesses like MS, RA or SLE are likely to experience symptoms of anxiety and depression at some point during their illness. These symptoms may be a result of (a) the changes to their bodies caused by their illness; (b) the side effects of medicines they are taking for their illness; and/or (c) the challenge of living with a chronic illness, such as the unpredictability of disease symptoms.
What is the Effect of Autoimmune Disease on Families?
The autoimmune disorders can be burdensome from the onset of the first symptoms. For many women, the initial symptoms come and go and do not cluster together in a way that leads healthcare providers to know with certainty what a woman has. In fact, it make take anywhere from months to years for the woman to receive a definitive diagnosis. During that time she may have consulted with several physicians or specialists, as well as mental health professionals. At times she may have felt that she was going crazy or have felt that physicians were suspicious that the symptoms were “in her head.” Initially then, it is a challenge for families to know what is wrong with their family member and the expense and frustration of seeing multiple physicians and being misdiagnosed or not receiving a clear diagnosis is stressful and discouraging.
Once a woman is diagnosed with an autoimmune disease, families can experience a mixture of relief and fear. There may be relief that her condition is finally known, that there’s a name for what she has, and that treatments are available. At the same time, there can be fear and distress if the symptoms of and prognosis for her disease are bleak. At this point, families are faced with the task of marshalling their resources and supporting their family member as she learns about her illness and considers the treatments available. Most autoimmune diseases are currently not curable, so treatment involves managing symptoms and slowing the progression of the illness.
Receiving the diagnosis and beginning treatment initiates women and their families into the extended phase of learning to live with and manage a lifelong illness. The course and prognosis for women with an autoimmune disease varies tremendously, both across women and over time, so it can be difficult for families to know how much their lives will change and what will happen to their family member in the future.
Depending on the nature and severity of symptoms, families may have to deal with financial burdens, serious medication side effects, communication difficulties, sexual problems, challenges associated with pregnancy and breastfeeding, and role changes as a result of the care required by the woman with the autoimmune illness.
How Do You Know When to Seek Help? How Can a Family Therapist Help?
Living with a chronic illness can be isolating. You are encouraged to seek support for you and your family at all stages of the illness experience. While your physician can help you manage the medical complications of your illness, a family therapist can help you and your family members cope with the day-to-day aspects of living with an autoimmune illness. Because living with an illness like MS, RA, or SLE can be very challenging, you and your family are certain to experience ups and downs as you manage the illness. Talking to a therapist may help the whole family make sense of the new life course that now includes illness. A family therapist can also help you manage stress, anxiety, depression, family conflict, communication problems, and caregiving issues associated with the illness.
If you decide to seek support in dealing with your illness, national disease-related organizations, like the National Multiple Sclerosis Society, the Arthritis Foundation, or the Lupus Foundation can often provide names and contact information of local therapists. As you select a therapist, you might interview potential therapists to determine their familiarity with your particular autoimmune disease. Helpful questions to ask a therapist might be, “Have you ever treated a woman living with SLE and her family?” “How familiar are you with the symptoms of MS and their impact on an individual and her family?” or “Are you familiar with the challenges of living with a chronic illness, especially a chronic illness with invisible symptoms?”
This text was written by Mark B. White, PhD, and Carmel Parker White, PhD.
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