Coping Strategies for Chronic Rare Diseases

September 1, 2020

By Revis Ann Massey, Psy.D. and Ms. Amanda P.

According to the NIH (National Institute of Health), in the United States, a rare disease is defined as a condition that affects fewer than 200,000 people.  When that rare disease is also chronic, the physical, emotional, and spiritual stressors can often exceed the coping skills of our patients.  Our hope with this article is to share insight into some healthy coping strategies for managing and living with rare chronic medical diseases, which can also be shared with patients and families of those who are struggling with a chronic medical disease, whether rare or common.

The coping strategies we want to highlight go beyond the typical list which includes mindfulness, yoga, exercise, and meditation, which are indeed useful with anxiety and stress associated with chronic illness.  Ms. Amanda Panko, a patient at the Meier Clinic in Richardson, Texas shared some skills she has learned and developed in the last 5 years after being diagnosed with TRAPS, a rare chronic autoinflammatory disease.  Amanda, like many patients with a chronic disease, recognizes that part of investing in herself has been taking time to process her thoughts and struggles with a Clinical Psychologist.  As a Clinical Psychologist who specializes in treating patients with health-related conditions, I asked Amanda to create a list of her coping strategies because of the insight she seemed to have in her own body and what she needs to do in order to be healthy emotionally, mentally, and physically.  These are a few of the main ones on her list. 

Amanda has found it helpful to focus on the things that she CAN control.  For example, she can control being prepared if her illness gets out of control.  She adds that she knows more about her illness than most medical professionals, so she created an important medical document, which is comprised of the two physicians to be contacted, her flare plans, current medications, information and resources about her illness.  This document is for herself, her parents, and her boyfriend. It is her voice if she ever has to go to the hospital and cannot speak for herself. 

When Amanda has a flare of her disease, she chooses two activities to create an internal reward, a feeling of accomplishment, calling herself a “Small Goal Goddess”.  She creates small goals spontaneously on really difficult days that will be a small accomplishment toward a bigger personal life goal.  She allows those small successes to create momentum to surprise herself throughout the day of what she CAN actually accomplish.  In the same way, she turns negatives into positives.  If the pharmacy had not properly stored her medication in the refrigerator, for example, she would choose to see this honest mistake as an opportunity for having an open communication with the pharmacy. 

Emotionally, Amanda considers emotional intelligence and self-awareness to be beneficial.  She says that feelings are temporary and by processing them in a healthy way (truly feeling them) allows true healing to occur so she can move forward.  By responding to life’s curveballs, she notices she has become less reactive to situations she cannot control. Intentionally using humor is an important coping skill. Amanda named her illness early in the journey “Henry” and would jokingly say that he is the ex-boyfriend that just keeps coming back.  She has named certain frequent symptoms by adding the word “fairy” at the end because it creates a lighthearted spin on the seriousness of the symptom.  For example, she will say the fever fairy visited.  Amanda creates feelings of joy, gratitude, and happiness even when she is facing struggles or is sick with breakthrough symptoms and has a daily gratitude practice before bed. 

One valuable strategy in the journey has been to take medical breaks and vacations when possible.  Amanda has also found it beneficial to take investment days when she realizes that her body needs extra rest.  She sets lower expectations with low activity to just let her body be.  She gives herself permission to “not be okay” for that time.  Amanda says that she gives herself the grace to just be.  She allows herself time to process more emotionally difficult times which allows psychological resilience. 

Having an amazing support system consisting of not only family members and her boyfriend, but also a private Facebook group with people who truly understand what she feels, has been helpful emotionally.  With a chronic disease and the expenses that can accrue, Amanda has learned to seek resources to help her navigate insurance and medical treatment.  She has learned that with rare diseases, some treatments are considered “off label” and medications can be expensive.  She suggests that it is important to familiarize oneself with drug company’s patient support programs because they can be an advocate for patients.  Familiarizing oneself with the state’s department of insurance options can also be beneficial if there is a need to challenge the insurance company.

Thus far, we have focused on the coping strategies for physical and emotional issues related to rare chronic diseases.  Having to battle symptoms of these diseases on a day-to-day basis can also drain the spiritual energy of a person, sometimes leaving the person feeling disconnected and isolated from their source of strength.  As a Clinical Psychologist who is a cancer survivor and who manages pain of Rheumatoid Arthritis on a daily basis, I cope spiritually with RA by connecting with people who inspire me to not give up when I feel disconnected from my faith and purpose in life.  They remind me of Truth and care for me when I am spiritually exhausted, frustrated, and want to surrender.  Being diagnosed with a chronic disease can either draw me closer to my faith or farther from it.  Managing a chronic medical condition (rare or common) and the symptoms that accompany it is not a sprint; it’s a marathon. Please share these coping strategies with your patients.

Dr. Revis Ann Massey is a licensed Psychologist at our Richardson, TX clinic. Special interests include working with people (and caregivers) of all ages who are coping with relationship problems, chronic illnesses or pain-related issues, women’s health, communication problems, anxiety, and depression.  Revis Ann believes that we all struggle with emotional and mental issues at some time and need help to get back on track.  Our bodies are created with emotional, spiritual, mental, and physical components, equally important.  If one area is out of sorts, the whole body suffers.

Located in our Richardson office


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