Saturday, February 2, 2013

The Importance of Perception

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 for those not overly excited by statistical analysis. 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.
“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).”
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 because it’s 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 that pleasant.

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.


Ah, the cliche question.


However, experience teaches the importance of perception. Is the glass half empty or half full? There have been times in my life that I have drifted towards the “avoidant emotion-focused coping strategies.” I’ll be frustrated and bitter that I’m 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. And 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 and I feel like 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?

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. Things like blogging, focusing on triumphs instead of setbacks, and no longer viewing my disease as a scary beast are all my ways of telling Addison’s Disease, “You do not consume my life.” 

Instead of feeling disappointed that I must live according to a semi-regular schedule, I will plan and allocate time so that I can do spontaneous things with close friends. Instead of focusing on how exercise stresses my body and can send me into a crisis, I will dialogue with my doctor how I should adjust my medicine so that I can run long distance races without killing myself.

I will use problem-focused coping instead of avoidant emotion-focused coping. I have Addison’s Disease, but I am so much more than a gal living with an incurable autoimmune disease.

I am Clearly Alive.

12 comments:

  1. I couldn't have said it better myself!! Thank YOU!!!

    ReplyDelete
    Replies
    1. May we all encourage one another as we walk this journey together :)

      Delete
  2. Dear Amber:
    No letter this week or blanks to fill in. You said it all so beautifully. I am proud of you and I am so grateful to be your mom.

    I love you,
    Mom

    ReplyDelete
  3. Just stumbled upon your site. Always interesting to see how others tackle this disease of ours. I write about it too, at www.shodfootrunning.blogspot.com .

    Best wishes!
    Dan DiPiro

    ReplyDelete
    Replies
    1. Welcome Dan!

      I am definitely subscribed to your blog now. AND you're a runner. That makes me happy :)

      Delete
  4. Love this. Well written. Thanks :)

    ReplyDelete
  5. Hi Amber, just came across your blog and am REALLY plesed I did. I'm 50, diagnosed with primary Addisons about 12 years ago. I started on HRT a few months ago and in the last couple of years I have taken on a high-stress job that means learning a whole new profession and arguing with people a lot. Possibly this is a bad idea for someone with Addisons...anyway, in the last couple of weeks it all crashed together and I felt increasingly anxious, paranoid, unhappy, nauseous, butterfly-stomached and so on but was blaming it on myself (I'm stupid, over-ambitious, failing at my job etc etc) until I read your blog and went "Oh, hang on, that's right...I ahve Addisons, this is all physical." So now I'm arranging to see my endo and take some time off; work ahve been fabulous about it. I stil feel like a fraud (no visible injury, no extreme symptoms) but at least what you wrote made me take action BEFORE I collapsed or worse. Thank you for the blog and keep it up :-) Carla

    ReplyDelete
    Replies
    1. Hi Carla, thank you for your comment! :)

      Yay for taking the problem-focused approach! And PS- I also work in a very high stress job. I regularly get asked the question, "Would it have been smarter for you to have picked something... well you know... easier? Especially with your Adrenal Insufficiency?"

      Probably. But that's not me and that's not who I am. Bring on the stress! I will counter it with my cortisol! :)

      Delete
  6. Awesome words! Thank you! I was diagnosed two years ago this month with a brain tumor (non-cancerous) Thank God! but because of the AD they will not remove it until I begin suffering life threatening episodes such as seizures. I have silent seizures like black out spells but because of the AD there again nothing can be done. Just keep holding on to the good moments and let the bad dissipate. Thank you for your words of courage.

    ReplyDelete
  7. Amber, I'm mesmerized with your writing. I read the words my son cannot convey to me like you have. Girl your a blessing to so many that lost with this disease. You've taken something horrible and turned it into something that can positively save others. Your my hero. Sincerely Conners mom

    ReplyDelete
    Replies
    1. Thank you so much! Now let's get Conner feeling better!

      Delete

Thank you for your comment. It will be displayed once approved by a moderator.