Thursday, May 21, 2015

Spoiled Identity

Baycare Presentation 5.19.15 Part 2

While presenting at a break out session for a recent Baycare employee in service day, I asked for a volunteer.

“I am going to ask you a question,” I said. “It’s an easy question. The hard part is that I am going to ask you the same question twenty times. You have to give a different answer each time. Are you up for it? Here is the question. Who are you?”

The volunteer nodded her consent. The questioning began. After each repetition she gave a different answer. “I am Denise, a wife, a mother, a nurse, a daughter, a friend.” Then she was stumped. I prompted her, asking if she played sports or had a hobby. Still, nothing! I thanked her and let her out of the hot seat.

We identify ourselves by what we do and by who we are in relation to others. Chronic illness spoils that identity. We can’t do the things we used to do, things that were a significant part of our identity. We lose jobs, have to work less, can’t keep the house as clean as we would like, and have to give up activities we enjoy. We can’t be who we were in relationship to others. Parts of those relationships remain, but other parts slip away. We have a hard time fulfilling our domestic roles, playing with the kids or grandkids or engaging in activities with a loved one. Our image of ourselves as healthy doers is eroded piece by piece. Our identity is spoiled.

I paused to ask the participants, care coordinators for the Baycare system, if the patients they encounter are ever angry. Everyone in the room nodded yes. These patients are angry because they are grieving for who they used to be. Just like we grieve for someone who has died, we grieve for our spoiled identity and for our hopes and dreams for the future. Who wouldn’t be angry? Anger is one of the stages of grief. Yet no one is there to help us recognize that we are indeed grieving or to help us through the process.

Once patients with chronic illness become aware that they are grieving, they can enter into the process. The process is messy and challenging. But there is healing and hope on the other side. We can spend the rest of our lives in anger and depression or we can move forward to create a new identity.

"The reality is that you will grieve forever. You will not ‘get over’ the loss of a loved one [or yourself]; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again, but you will never be the same. Nor should you want to be the same. Nor would you want to be". Elizabeth Kubler-Ross and John Kessler.

Tuesday, May 19, 2015

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?