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On Being A “Novice Patient”

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By John Huber, MS – CLL Society Board Member
By John Huber, MS – CLL Society Board Member

Throughout our lives, particularly at different stages in our lives, we find ourselves in new situations. Some we choose; others are thrust upon us—like when a doctor says “You have CLL”.

Whatever the reason and whether we realize it or not, we become a “novice”.

Webster defines novice as “a person who has just started learning or doing something”, or alternatively as, “a person who has no previous experience with something”.

When we first got behind the wheel of a car for the first time, we were novice drivers. In college, we became novice adults. When we married, we became novice spouses and when the first child arrived, we became novice parents. Similarly, when we took up a new sport or hobby, we became a novice tennis player, golfer, bridge player or swimmer. After 45 years of service in nonprofit organizations I am now a novice retiree. When you are diagnosed with a rare disease like CLL, you become a novice patient.

With some things in life, it’s OK to remain a novice, but for others we need to learn everything we can, hone our skills and become an expert. It’s OK to remain a novice tennis player and enjoy the game and the exercise, but for someone newly diagnosed with a rare disease, it is essential to become an expert.

How do you do that? The same way we learn any new skill. You can read, study, watch and practice on your own, but it’s often much easier and effective if you get some help. A coach, a teacher, a professional, a mentor can help “ get you up to speed”, “learn the ropes”, “figure it out “ or “teach you t tricks of the trade”.

Isn’t that how we became experts at other things in life?

Finding the right coach or teacher when we become novice patients with a rare disease can be particularly difficult. There aren’t a lot of trainers or coaches out there, but that’s where groups like the CLL Society can be so helpful. The information, resources, materials, programs and people that the Society has gathered, assembled, curated and made available through its website, newsletters, volunteers and support groups can help you deal with a life changing diagnosis. With people who actually DO know what you are going through, you can make better treatment decisions and learn to live successfully with CLL.

We can help you move from being a new, confused, or frightened first timer– standing there about to swing a club parallel park a car or change a newborn’s diaper—a novice—to an informed prepared and confident expert patient. And you don’t have to do it alone.

As CLL Society founder Brian Koffman always reminds us, “We are all in this together”.

John Huber has more than 45 years of senior leadership experience in both national and international nonprofit organizations. Most recently he retired from the Aplastic Anemia and MD International Foundation where he served as Executive Director for the past 8 years. He has served as Executive Director of the American Urological Association Foundation and the Lupus Foundation of America, as well as Vice President of Membership Services and Leadership Development at Goodwill Industries International. His expertise includes creating and implementing new organizational models, programs and strategies, securing financial resources, developing patient-centered services and training nonprofit executives and board members. John holds a Master’s degree in Adult Education from the University of Wisconsin, Milwaukee. In his off time, John enjoys playing guitar and driving his classic 1963 MGB.

Originally published in The CLL Tribune Q2 2016.