I recently read a study conducted in 1999 by The British Psychological Society. The full study can be found here. However I will provide a brief summary. The goal of this study was to determine how someone’s attitude towards their chronic disease affects the way they cope with a specific focus on Addison’s Disease. Before I discuss this study more, I would like to quote a paragraph from it.
Patients’ Illness Representations
“Addison’s disease (AD) is a rare disease with an incidence rate of about 40 to 60 cases per million adults (Orth, Kovacs & Debold, 1992). Patients suffering from this disease report a wide variety of non-specific complaints including weakness, fatigue, general malaise, weight loss and gastrointestinal symptoms, which all have a biological basis in adrenal insufficiency. As AD shares many symptoms with other disorders, differential diagnosis is difficult. Treatment consists of a therapy in which the hormonal deficit of cortisol and aldosteron is replaced by medication. Without this medical treatment, AD is life threatening.
Therefore, when diagnosed, patients are taught that an active life of normal length can be led as long as they observe the prescribed medication regimen (Orthet al., 1992). This sounds simple, but medication intake is bound to a rigid treatment regimen requiring rather complex and demanding self-care behaviours, leaving the patient with quite a responsibility. Patients are instructed to increase their medication intake in the case of physiological or psychological stress, minor illnesses, dental treatments and sports.
However, because a gold standard to determine the right dosage of medication is lacking, the possibility of an overdose or underdose is always present. Moreover, clear criteria for adequate self-care are often lacking or only stated in such vague terms as ‘get enough rest’, ‘watch yourself’ and ‘take good care of yourself’ (Knapen & Puts, 1993). Education of the patients by medical practitioners almost entirely focuses on the medication regimen. The patients themselves must discover which actions are instrumental in keeping AD under control.
In sum, the treatment of AD requires active involvement on the part of the patient and may cause great personal distress when the symptoms react less well to medication. In addition, AD patients greatly differ with respect to actual physical and psychological functioning (Knapen & Puts, 1993): AD causes little discomfort for some, while others experience AD as extremely burdensome. It has therefore been argued that cognitions and the way patients try to cope with their illness play an important role in functioning in AD (Knapen & Puts, 1993).”
“Rest.” “Eat healthy.” “Don’t stress.”
I like how that paragraph speaks of Addison’s. It’s always encouraging for me when someone else can put into words my complaints or frustrations. When I don’t feel well, I have such a hard time explaining how I don’t feel well. The pain is not localized in one specific area.
When I dialogue with my doctors how to feel better, I am often given vague advice such as “rest,” “eat healthy,” or “don’t stress” (Ha. Right). So much of living that “healthy normal life” comes from trial and error.
Over the years I have had to learn through experience what taking too much cortisol feels like and what taking too little cortisol feels like. FYI, neither were pleasant.
Let us return back to the study. 63 Addisonian Patients ages 18-65 were interviewed with specific focus on how they viewed their disease. The conclusion?
“Patients who use avoidant emotion-focused coping strategies have more difficulty in adjusting to chronic disease than those who use more active problem-focused coping strategies.”
At one level, it’s odd to think that my attitude towards my disease plays such an important role on how functioning I shall be in society. I have no cortisol. The inner cortex of my adrenal glands are dead. A happy optimistic outlook on life cannot jump start a dead organ.
However, experience teaches the importance of perception. Is the glass half empty or half full?
Avoidant Emotion-Focused Coping
At certain times, I have drifted more towards the “avoidant emotion-focused coping strategies.” I grow frustrated and bitter that I am diseased. I focus on all the things that I cannot do. I draw attention to all the times my doctor crushed my dreams reminding me of my limitations.
During those times I grow more and more miserable. My symptoms increase dramatically. There seems to be an ever increasing pressure on my chest that makes it difficult to breath. My life is being lived inside an ever shrinking box.
I know I don’t feel well, but I also don’t feel like I can change anything. So then I feel worse and I only grow more miserable and depressed. It strains all of my close relationships and scares me. If this miserable feeling is what they call life, then why is it worth it?
Active Problem-Focused Coping
I try to not stay in that mindset for long periods of time. Recently, I have been trying to make purposeful choices to remain optimistic and hopeful. I blog. I focus on my triumphs instead of setbacks. I choose to no longer view my disease as a scary beast. These are some of my ways of telling my Addison’s Disease, “You do not consume my life.”
I will not feel disappointed that I must live according to a semi-regular schedule. Instead, I will allocate time so that I can do things with friends. I will not focus on how exercise stresses my body and can send me into a crisis. Instead, I will dialogue with my doctor on how to adjust my medicine.
I will use problem-focused coping instead of avoidant emotion-focused coping. Although I have Addison’s Disease, I am so much more than just a gal living with an incurable autoimmune disease.
I am Clearly Alive.