Alpha-gal Syndrome Is Not Who You Are

I focus on living my best life with Alpha-gal Syndrome using a strategy based on advice I received many years ago.

A Piece of Advice

The best advice ever given to me was from a doctor at the University of Michigan Medical Center in the late 1990’s.  After years of seeing one doctor after another and an array of potential diagnoses, this guy figured it out in a 30-minute office visit.  It was fibromyalgia, a condition characterized by chronic, widespread musculoskeletal pain.  He was very kind, and offered me this advice:  He said, “There are two kinds of people with fibromyalgia.  Those who do well, and those who don’t.  Those who do well stay active, social, and maintain a positive outlook on life.  Those who don’t do well, isolate, dwell on their pain, become sedentary, and allow it to consume them to the point that it becomes their identity.”

He was absolutely correct! 

Those Who Don’t Do Well

I sought out a fibromyalgia support group and met the exact range of people he was talking about.  The group discussion usually centered around participant’s discomforts, disability, and feelings of discouragement.  Of course, supportive encouragement and helpful information was offered, but the focus was far from, “Let’s conquer this and get on with living our best lives.” 

Those who do well

About that same time I learned that a nurse friend whom I knew also had fibromyalgia.  She had no interest in the support group.  She just didn’t have the time.  Besides nursing, she had a family and was an avid outdoor enthusiast.   I was intrigued by the disparity between the people who viewed their fibromyalgia as a disability, and this nurse who lived, played and worked hard in spite of it.  Did she have rough days?  Sure.  But her focus was not on her illness.  Her focus was on living her life.

Focus on Living Life

It took some time for me to get the hang of living with the condition. I learned that staying active, managing stress, and eating a healthy diet was more effective than any pill.  Today, while I do have painful days, over all I manage very well.  Pain is not my focus, nor is it my identity.  Very few of my friends even know that I have fibromyalgia.  I have places to go, things to do, and better things to talk about!  I’ve gone ziplining in Costa Rica, climbed a waterfall in Jamaica, rappelled down a waterfall in Mexico, walked the streets of Aruba and Bali, fished for walleye in Canada, cooked meals on campfires, and much, much more, all since that doctor appointment back in 1998.

Alpha-gal Syndrome Is Not Who I Am Either

Today I am working every day to apply this principal to Alpha-gal syndrome. If you’re not familiar with it,  Alpha-gal syndrome is a tick-bite induced allergy to non-primate mammals.  With Alpha-gal, I do have to accept some limitations in regards to foods that I eat and products that I come in contact with.  And, while I find it extremely uncomfortable, everyone around me has to know about it.  Whether it’s relatives at a family meal, or strangers waiting tables in a restaurant, a conversation has to be had to assess and minimize exposure risks.  In spite of those things, I still travel, I still go to friends and family meals, restaurants, and sporting events.  I choose not to allow Alpha-gal Syndrome to become who I am.  I choose not to allow it to stop me from living my life.

Let’s Conquer This and Get On With Living Our Best Lives!

Everyone has challenges in life.  And some days it seems like the hits just keep on coming.  But pain, adversity, problems, are not who you are.  They are just challenges that you face.  There is so much more that makes you a unique and beautiful human. 

If you sit down and decide that an obstacle is just your life now, then it will be. 

But if you stand up and stubbornly refuse to allow a circumstance, a diagnosis, or a limitation to determine the course of your life, you will be free.

Stand up!