What is your illness model?

Baycare Presentation 5.19.15
Part I

Health professionals know about acute and chronic models of illness. Many patients do not. A broken bone, ruptured appendix, and strep throat are examples of acute illness. The onset is usually swift and clear; a bone is sticking out of your arm, you are in excruciating abdominal pain or you can barely swallow, have a fever, and white patches in your throat. Acute illnesses are easy to diagnose. There is little doubt about treatment. A cure is common. In fact, most people get better and go back to living normal lives. This is the model of illness for most patients.

For a third of Americans, that model just doesn't work. We are the people with chronic illnesses. At the beginning, symptoms come and go. We might even doubt whether we had symptoms in the first place or if the symptoms were all in our head. Just like your tooth stops hurting when you go to the dentist or your car stops making that noise when you get to the mechanic, symptoms of chronic illness may disappear by the time you see the doctor. As symptoms increase in frequency and severity, we begin the diagnostic journey. Not only do many chronic illnesses lack clear diagnostic tests, each illness brings a few illness buddies along to confound the diagnostic process even more. Finally, we are relieved to find out that what we have has a name. Now we can get better! Not so. Treatment for chronic illnesses and the illnesses that come along in overlap is anything but clear. Trial and error may be the norm until the doctor finds just the right combination of treatments. Now we can get better! Not so. Cures for chronic illnesses are rare. So why bother with treatment? Patients and providers, alike, need to remember that in the absence of a cure, the goals of treatment are to reduce and relieve symptoms, slow the progress of disease, and prevent permanent damage.

If patients hold onto the acute illness model is it any wonder that they are angry because they do not get better? Is it any wonder that patients who receive treatment but don’t get restored to full health are frustrated? Is it any wonder that, without hope of a cure, patients become non-compliant?

Soldiering On

This morning I am reflecting on a young woman who clearly has a chronic illness but her diagnosis remains elusive. As with most chronic illnesses, her health is unpredictable from day to day and even hour to hour. She keeps soldiering on. I did that too until I finally got hauled off in an ambulance.

When we refuse to take the time we need to heal, that is a symptom of denial. When we believe that we are indispensable, that is a symptom of denial. When we say, "I'll be fine tomorrow" without any concrete evidence, that is a symptom of denial.

Part of this irrational thinking is that we have to push ourselves so that we won't let down our loved ones or friends or employers. The truth of the matter is that when we soldier on, we aren't giving our best. When we make promises that our health probably won't let us keep, we are letting them down even more. We create unreasonable expectations and then beat ourselves up for not meeting them.

A good way to find your compass in this situation is to pretend that you are healthy and that someone you love has what you have. What would you expect of them? What would you do to help them? What advice would you have for them? Now, do that for yourself.

Chronic Illness and Thanksgiving

The first Thanksgiving after I was diagnosed with systemic lupus erythematosus, I couldn’t find much for which to be thankful except that I was still alive. I was in constant pain. I felt like I had an unremitting case of the flu for over six months. I had lost both my jobs and had no income. A kidney biopsy the month before Thanksgiving confirmed lupus nephritis and I had started on chemotherapy. When you have a chronic illness, it’s often hard to find reasons to be thankful.

Seven years later, my lupus is in remission. The remission is chemically induced, but I’ll take any remission that comes my way! Reflecting back, I am actually thankful for my lupus. That probably sounds very strange. Why would I be thankful? Lupus robbed me of so many things-ability to work, ability to do many activities of daily living, my identity and my self esteem. There was nothing left but me, breathing. I have since built an amazing new life. I would never have taken the risk of eliminating things from my life and adding some new ones if I hadn’t first been empty because of my chronic illness.

Today, I am healthier than I have been at any other time in my life, in spite of the lupus. So today, in addition to giving thanks for all the good things in my life, I am also giving thanks to lupus that gave me the opportunity to build a new life.