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. The goal of this study was to determine how someone’s attitude or their perception towards their chronic disease affects the way they cope with a specific focus on Addison’s Disease.
Patients’ Illness Representations
Before I discuss this study more, I would like to quote a few paragraphs.
“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.
It’s all about that Perception.
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?
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. When considering my life, 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.
Conclusion
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.
Kim W
I couldn't have said it better myself!! Thank YOU!!!
Amber
May we all encourage one another as we walk this journey together 🙂
Lisa M Stapp
Very nice!
dan dipiro
Just stumbled upon your site. Always interesting to see how others tackle this disease of ours. I write about it too, at http://www.shodfootrunning.blogspot.com .
Best wishes!
Dan DiPiro
Eryn Lynum
Love this. Well written. Thanks 🙂
CarlaB
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
Amber
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! 🙂
Anonymous
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.
Anonymous
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
Amber
Thank you so much! Now let's get Conner feeling better!