Wednesday, November 13, 2013

Never, Never, NEVER Give Up

The sick are tempted to give up in many ways. The most tragic is to give up on living in response to unrelenting pain. Hopefully before this level of despair takes hold, we can find ways where persistence can move us toward a better life, even with illness, and even while living with pain and reduced function.

The first path is to never give up until you find a competent doctor, experienced in dealing with your symptoms or diagnosis. The next step is to begin effective treatment. For many of us, just accomplishing this takes years. Patients with vague, hard to diagnose illnesses are often sidelined by doctors who don’t know what to do with them. Our health care system pays for procedures and interventions, and if your doctor doesn’t connect you with the tools in his or her toolbox, you may be treated, literally, as if you are not worth much. Doctors may respond to their own lack of expertise by blaming the victim, implying that if the fix isn’t obvious, you must be faking, malingering or mentally ill. Understandably, after experiencing this kind of treatment, patients can be tempted to give up looking for answers, taking refuge in bitterness, or magical thinking about magical cures, or by taking the mediocre doctor’s prescription to heart and deciding to ‘just live with it’.

A better solution is to fire the doctor, move on, and never give up until you meet the person or, more likely, the team that can offer help. There are outstanding physicians out there, and they are not necessarily at elite institutions. They are in small towns, and in small practices. Thy may have the wisdom of years, or the fresh insights and enthusiasm of youth. They may be GP’s or internists who will know where and to whom to refer you. Keep looking. Once you have found your partner, know that settling on effective treatment may also take time, a lot of it. You are unique, your symptoms and your system is unique, it may take dozens of trials and adjustments and the aid of many providers before you hit on the combination that helps bring your symptoms and system into better balance. This persistence does not guarantee a cure, or even the elimination of your symptoms, but it may mean you can find relief that keeps your illness from progressing and makes your symptoms less severe, so that you can live more fully.

Finally, making peace with your new life is not the same as giving up. Wailing about all you have lost and how much you want your old life back is part of the grieving you may need to go through, but it is also stressful and exhausting. At some point we need to accept our new life with illness, while never giving up on making it the best life it can be. These aren’t mutually exclusive, but two parts of a healthy whole.

Tuesday, November 5, 2013

10 Blogs, 10 Tips: Living Well, Even While Sick

In our book, You Don’t LOOK Sick! Living Well with Invisible Chronic Illness, I wrote a chapter called ‘Joy’s Top Ten List for Living Well, Even While Sick’. These were attitudes and strategies I developed after I’d accepted that my illnesses were not going to go away. Seeking a diagnosis, finding the right doctors, and experimenting with effective treatments took a long time, but finally I got to a point where I asked the question, “I wonder if it is possible for me to live well, even if I can’t get well?” I found that it was, and these ten strategies helped me build a more satisfying life with illness.

I’ve revised and adjusted the items over the years, and over time I realized I would continue to live by these principles even if I enjoyed perfect health someday. One of my latest blogs addresses #1, Take Care of Yourself First. For the next nine blogs, I will take each of the next items and expand on what it means to me and how I’ve utilized each strategy in my life. I hope these blogs will help you build a better life with illness, and I would love to know if you have any different items on your own Top Ten List you’d like to share. Here’s my Top Ten:

Joy’s Top Ten List for Living Well, Even While Sick

                1.  Take care of yourself first.
                2.  Never, never, never give up.
                3.  Be honest about how you arefeeling.
                4.  Enroll in the School of Whatever Works.
                5.  Make friends with fatigue.
                6.  Live as a child.
                7.  Step out of the box.
                8.  Search for silver linings.
                9.  Find a way to share your gifts.
              10. Be Still.

Stay Tuned!