Baby Steps

“Alice: Would you tell me, please, which way I ought to go from here?
The Cheshire Cat: That depends a good deal on where you want to get to.
Alice: I don't much care where.
The Cheshire Cat: Then it doesn't much matter which way you go.
Alice: ...So long as I get somewhere.
The Cheshire Cat: Oh, you're sure to do that, if only you walk long enough.”
-Lewis Carroll, Alice in Wonderland

We want to get better. We want to go back to our pre-illness self and our pre-illness life. We want to go back to a time when our days were not filled with pills and doctors’ appointments, procedures and blood draws. Since we can’t go back, the only way to go is forward. But where are we going? We are going to do whatever we need to do to live the best life possible. We are going to be sick well.

Goals are great. Goals mean that we have hope. When chronic illness comes to visit, we have a choice. We can hold onto our old goals or we can make new goals. In 2003, the loftiest goal I could imagine was getting out of my pajamas every day or at least changing to clean pajamas by dinner time. I learned that to achieve the goal of getting out of my pajamas, I needed to take a series of small steps, resting after each one. Decide what to wear. Rest. Find the clothes. Rest. Take a shower. Taking a shower was huge. I had to rest for at least an hour. Get dressed. Rest. Be proud of myself. I did it! The first step is always getting started. Every small triumph inspires us to go on.

What new goals do you have now that you have chronic illness? Pick one goal that is achievable. Make it a small goal. Make a list of all the steps you must take to get to the goal. Go back over the list and break each step into smaller steps. Work on just that one goal, one tiny step at a time. Setbacks are not failures. If you have a setback ask yourself what you learned. Then carry on. Give yourself permission to keep on trying. Life with chronic illness is about progress, not perfection.

From Life Recycled: Creating a New Normal in the Face of Chronic Illness Release date April 1, 2018.

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?