Rewriting the Narrative: Chronic Illness and the Power of Outlook
When I was a young nurse working in the hospital, we would often have patients who would return to our unit many times. These were chronically ill patients often in their 60’s and 70’s, my age now.
At the time, admitting them to the unit was so time consuming because they were on so many medications, plus a list of diagnoses and allergies just as long.
My memories are vivid. What happened to these patients to make them so sick? How did they end up on so many medications?
The most prevalent remembrance though, about most of these patients, was their personalities. Most nurses will know exactly what I am describing. They were cranky, ornery and just plain miserable. Of course, they did not feel well, so some of that behavior was understandable, but they had an overall presence.
It was difficult to please them. The room was too cold, or too hot. The coffee you brought them was bitter. The medication was not on their time schedule, no matter how many times you explained that you had to follow the doctor’s written orders. You didn’t bring them enough blankets or pillows. I think you get the idea. There was no pleasing them. They were just plain miserable. Life had dealt them an unfair hand, and they wanted everyone to know.
I would have preferred to care for three post-operative patients in place of one negative chronically ill patient.
When I was diagnosed with my first chronic illness, I made a very conscious decision to never be like those patients. No matter how much pain I was in, or how difficult the treatments were, I would not be that cranky woman.
Fast forward to today. I now have two genetic diseases, three autoimmune diseases and two “normal” diseases. I am that 69-year-old patient on a very long list of medications. I see some medical assistants roll their eyes when I go to a new physician and they need to review each medication and dosage.
I have specialists in three states, plus a few in my own state. I am called a complex patient by all my physicians. Some just refer me on to others, not knowing how to care for me.
My resolve has remained strong though. I remind myself daily that I do not need to be the miserable patient. I have a choice. I can be pleasant to all my providers and their staff. Being negative is counterproductive. It will not increase my likelihood of achieving favorable healthcare.
More importantly, I feel better, and so do the people around me. My family and friends always remark that I “look so good”. I can assure you (and them), that I do not feel good, but a smile makes a massive difference in how you feel. I smile every day.
I shower daily, even if I feel fatigued. I sit on a shower bench. Then I must rest for quite a while. But my spirits are lifted by being fresh and clean. I get dressed even when I am going nowhere, which is most often the case.
I haven’t been able to eat solid food in over a month, but I make protein shakes and blended food to manage my nutrition.
Until I am more stable, I will fight like hell to move forward, because I will always choose to be that positive patient. Oh, and I should add that having a therapist who supports me 100% has been critical to my outlook.
Chronic, complex illnesses are not simple, straightforward lifestyles. We can rewrite our narrative and improve our outlook. Even people who are dying can do so.
I wish you the same in the insanely complex healthcare system we are in right now.
Peace and love to you all,
Jan