Living with  - not around - a Chronic Health Condition

Being diagnosed with a chronic health condition can be a distressing experience. Chronic health conditions, such as endometriosis, lupus, and gastrointestinal disorders, require lifestyle changes that impact a woman’s relationship with herself, her family and friends, her work, and her environment. Here at CTWPS, we support women through the psychological and behavioral adjustments of living life with a chronic health condition. Below are three ways that we empower women to manage their health as they continue to live meaningful lives.

1. Check your thinking. 

When a woman is first diagnosed with a chronic health condition, she may notice herself engaging with thoughts, such as: This will never get better; I’m always going to be sick; or My life is only about my health.

In therapy, we empower women to recognize that while these thoughts do highlight the stressful and often uncertain nature of a chronic health diagnosis, they are nonetheless maladaptive because they often result in a feeling of helplessness, contributing to depression and anxiety that can exacerbate physical health symptoms. In treatment, we teach women how to check the evidence and revise their thoughts to be less rigid.  In turn, women often notice feeling more hopeful and motivated to engage actively and openly in their lives. 

For example, a woman may check her thought “I will never get better” by first honoring the truth in the thus far chronic nature of her condition, and then also recognizing times that she was able to attend an important event, go on a vacation, and complete day-to-day tasks fully. We recognize that it can be tempting to get stuck in a mental filter focused on negative health experiences, but “balancing the evidence” can help expand her focus and also notice her ability to engage in meaningful ways when she is feeling well. 

2. Get to know your body with chronic illness. 

Women may also get stuck in worrying about the uncertainty of their health condition, asking themselves such questions as: What if my symptoms get worse? What if my symptoms flare up while I am away from my home? Should I get another doctor’s opinion about a treatment recommendation? The uncertainty and lack of complete control over one’s body and symptoms may make women feel frustrated, resentful, and confused. Coupled with helpless thoughts that she will not get better, she may resort to isolating behaviors and unhealthy coping skills, such as excessive sleeping, avoiding social engagements, or over-relying on food for comfort.

In therapy, we encourage each woman to learn more about her unique body with chronic illness, as this has been found to increase the ability to cope with symptoms. Specifically, this knowledge will provide her with data regarding potential precipitating factors, patterns in flare-ups, and variables that may impact the frequency and duration of flare-ups. This data is empowering if it provides her with a lens to influence and manage symptom flare-ups. 

One technique we often use to help women become more attuned to their bodies is called Symptom Tracking. By consistently tracking her symptoms, including type, severity and duration, as well as coping mechanisms that she has tried, we are able to identify any patterns or triggers for her symptoms that may otherwise go unnoticed. In turn, she will have more specific information to share with her health care team, and she can use this information to inform decisions regarding making plans. For example, someone with a chronic gastrointestinal disorder may track her symptoms and learn that a certain food group leads to a severe flare-up in her symptoms. This information helps her feel in control over reducing the probability of a flare-up, which affords her the opportunity to go out with her friends to a restaurant without worrying about her stomach’s reaction. 

Using a symptom tracker can also provide helpful information about the efficacy of different coping skills and pain management techniques. Collecting specific information about what helps can be empowering because it provides increased hope and flexibility. Without this information, a woman may fear her symptoms and/or flare-ups in symptoms because she is unsure about how to manage them. As she learns more about ways to manage, she may find herself more willing to make plans and tolerate the possibility of a flare-up because she feels more confident in being able to problem solve.  

3. Live your life with chronic illness, not around it. 

A common thought among women when first learning how to manage their chronic illness is: “I can’t make plans because I can’t predict how I will feel at that time.” In turn, a woman who harbors this thought may develop a conditional rule that “if I can’t be certain that I will feel well, then I shouldn’t risk making plans.” Consequently, this approach to coping often leads to avoidance, and she may notice that her world becomes smaller, and primarily focused on her health (e.g., medical appointments). Additionally, through avoiding making plans, she reinforces the fear that she will experience a symptom flare-up while engaging in these plans. When she turns down activities and events, she also reinforces depressing feelings and resentful thoughts about being deprived of engaging in her life due to chronic illness. 

A risk in living according to this rule is missing out on opportunities to engage in meaningful activities that improve one’s psychological well-being. Here at CTWPS, we work with women to adjust this rule, trying an approach that involves making those plans without predicting the future, and trusting that the plans can be adjusted if a symptom flare-up occurs. By taking this approach, she learns to live her life flexibly, expanding her world to include planning and engaging in meaningful activities, and recognizing that she can engage in problem solving to adjust those plans if needed. 

Through practicing these skills in balancing thoughts and engaging in healthy coping behaviors, a woman can feel more empowered to live her life in a meaningful way while managing chronic illness. If you are seeking support in navigating your journey in living life with chronic illness, we are here and ready to support you.