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Lessons Learned Through Chronic Illness

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Having been a therapist and psychiatrist for more than 30 years, I know well how labels can affect what we believe about others and ourselves. When Aibileen in The Help tells Baby Girl, "You [are] kind, you [are] smart, you [are] important," we know intuitively that this will sow seeds of strength and self-esteem. We shudder when we hear an adult shame and humiliate a child.

Through my medical training I have shuddered more than once. When on rounds, a patient lying in the hospital bed was all but invisible as the attending discussed this or that fascinating finding. Yet none of this had adequately prepared me for understanding the labels and impact of a medical diagnosis itself, particularly a cancer diagnosis. For sure, labels can be helpful if they illuminate a path to treatment and cure, and when used with kindness they can open the way to a specific and relevant treatment. Unfortunately, too often a diagnosis is not applied in this way but instead becomes a label to create distance and otherness. Most importantly, this creates an illusion of certainty and knowing. As a group, we physicians are not that comfortable with uncertainty, so we do a lot of naming, as though the naming itself gives us power. We also tend to track numbers, as though these alone are truth. In my therapy work with patients I have most often found it is the deep understanding of what is keeping each person trapped in isolation, loneliness, hurt, fear, anger or righteous indignation that leads us together to find a way out. By focusing exclusively on diagnosis and numbers we can inadvertently decrease or even remove hope, believing we are just sharing truth.

As I have lived now for eight years with an autoimmune disease that defies diagnosis and a blood marker for multiple myeloma that has required repeated bone marrow biopsies, I have learned that there are things much worse than uncertainty. Mercifully, Enbrel has kept me out of pain and the multiple myeloma markers have been stable. Occasionally I feel dangled over the precipice but keep finding a way back to safety. Living with uncertainty, I have come to believe that I know things about my body that neither patients nor doctors are taught to value. Here are 10 lessons I've learned while living with chronic illness:

1. Know that trusting innate body knowledge requires tenacity and strength, and it is worth fighting for. I have applied my scientific mind to pursuing the discovery of what helps me, and I have tried to pay exquisite attention to the feedback I get from my adventures.

2. Uncertainty may be in the equation, but creating balance is still key. I neither claim answers nor knowledge of how things will evolve, but I believe that creating balance is more likely to lead to a positive outcome than living day to day in terror, worrying what my numbers are doing.

3. Numbers matter, but they're not everything. I go to the clinic regularly and check the numbers, which have mercifully been stable or down. I don't agree to every X-ray or excessive blood test and insist on having a say.

4. Enjoy life more and don't wait. I do more of what I enjoy, and I do it today. Choosing not to delay out of joy, rather than fear, is a hard-won gift of this process. I continue to love working with my patients and helping them move the patterns of pain that keep them stuck, as I work on learning my own new patterns of healing.

5. Seek to understand the mind-body connection. I have shifted from giving lip service to the concept of mind-body to a real understanding of what it means. I have learned that I need to modify my internal patterns from the "fight-flight" of the sympathetic nervous system to the relaxation response of the vagal or parasympathetic system. For me, deep breathing, yoga, qigong, aerobic exercise, massage and mindfulness have facilitated this switch.

6. At times, new processes take time to work. Some things felt right immediately, but there were other changes that only began to feel right over time, as did the process of dramatically changing my diet.

7. Dose is important. One thing that surprised me was learning that dose is as important in energy work as it is when taking an antibiotic. For instance, sometimes I needed acupuncture twice a week, other times not at all. Sometimes three deep breaths might be enough to shift my autonomic nervous system, other days many more were needed.

8. The times when you least want to do something may be when you most need to act. It is a struggle to overcome inertia. When I lose my way, and even lose hope, it is crucial to do the things that I know help when I am feeling good.

9. Set boundaries. What I learned about setting boundaries and limits with my medical doctors proved just as critical when I worked with acupuncturists, cranial sacral specialists, naturopaths and chiropractors.

10. Find professionals who can tolerate uncertainty and remain hopeful. I flee from anyone who is sure they hold "the truth." If they can't tolerate uncertainty and still be resolute, how will I? Gratefully, and with missteps, I have assembled an awesome team that guides me on this journey through conventional and complementary paths.

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