Segment One: Defining your Illness
Introduction
There are many ways to "experience" chronic illness. . . as a patient, as a loved-one of a patient, as a provider. For purposes of enhanced learning, in this module, you will primarily be asked to experience chronic illness as a patient. From what you learn as a patient, you will then be expected to extrapolate the nursing care implications.
Chronic Illness Defined
According to the National Center for Chronic Disease Prevention and Health Promotion (http://www.cdc.gov/nccdphp/about.htm) , chronic illnesses are "illnesses that are prolonged, do not resolve spontaneously, and are rarely cured completely."
Mosby's Medical and Nursing Dictionary (1986) further defines a chronic illness as "a disease or disorder developing slowly and persisting for a long period of time, often for the remainder of the lifetime of the individual." (p. 239)
To be given a diagnosis of a chronic illness is to be given a life sentence.
These chronic conditions, these life sentences, are a fact of life for an estimated 99 million Americans. Of these, 41 million people have their daily activities limited in some way because of their condition, and 12 million are unable to live independently. (Chronic Care in America, 1996)
It is also useful to distinguish the idea of a "disease" from the idea of an "illness".
A "disease" is a pathological process involving some abnormality of function at the cellular and sub-cellular level.
An "illness" is the social and psychological phenomena which the disease causes the person to experience - involving perception, behavior and experience.
Hence, a chronic "illness" involves the entire holistic experience of having an on-going, incurable pathological process occurring within your body.
Receiving Your Diagnosis
You haven't been feeling "quite right". You are more tired than usual. You have vague aches and pains. . .one day it's a headache; the next your stomach is queasy. Luckily, it's time for your annual physical.
After you exam, X-rays, mammogram, EKG, biopsies and lab work, your physician calls you in to talk further. She is sorry to inform you that, based on your tests, you have: _____________
Fill In The Blank
Wonder what your doctor said? Well, unlike real life, you get to choose (that is, unless you actually do have one of the diseases listed below. If you do have one of these chronic illnesses, by all means, complete this module on the basis of your actual life journey.)
"You have" : (Pick one and email your choice to Dr Pierce @: spierce@email.unc.edu )
- Breast Cancer
- Diabetes
- Hypertension
- Epilepsy
- Crohn's Disease
- Alzheimer's
- Hemochromatosis
- Sickle Cell Anemia
Learning More About Your Disease
The National Library of Medicine and the National Institutes of Health web site provides accurate, current and reliable information about your new life partner, your disease.
Once you go to the site, find the link to your disease - either it will be under the "Frequently Requested topics" in the box on the right, or under the first letter of your disease.
- Once you bring-up information on your disease, navigate the information to discover:
- How is your disease diagnosed typically? (i.e. did your doctor get it right?)
- What symptoms will you most likely develop over the course of the disease and its treatment?
- What is your prognosis for continuing your active life as a registered nurse and University student?
- What treatments are generally recommended and, if choices are given, which treatment do you choose?
- Over the long haul, how is your disease best managed? What life-style changes will you most likely have to make?
(The interactive tutorials are particularly helpful.)
- From your disease's main page, perform the Medline search and read at least one recent research article regarding treatment options.
NIH/NLM web site:
http://www.nlm.nih.gov/medlineplus/healthtopics.html
Final Activity For Segment 1
Now that you have reviewed the information about your disease, answer the following questions (in a WORD document) and email to Dr. Pierce: spierce@email.unc.edu
- Etiology: Where do you think your disease came from? - specific to you. (i.e., How did you get your disease? Genetic? Environmental? Was it in any way your fault - from not modifying your risk factors?)
- What course of treatment(s), therapy(ies) are you going to now pursue? Why?