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Marauding Immune Cells and a Look Forward

It seems a bit cliché for me to write an “end of year” blog post. But I’m going to do it anyway.  This has been such a transformative year for me in many ways.  Personally.  Professionally. Spiritually.  I have enormous gratitude for those who lifted me up these last nine months and cheered me on.  I have reached a state of peace and confidence in myself and my work that I never had before.  My hope is to continue on this path, not looking back and continuously moving forward to bigger and better things.

This year brought me to professional lows and highs that I had never imagined.  Being fired turned out to be a defining moment for me.  My entire professional outlook transformed, and I learned a lot about my own resilience and capacity for change.  The height of my year was going to a mysterious desert city and meeting the most amazing people.  My journey to Riyadh is something about which I will forever be grateful.  I am deliriously excited that I have been invited back and will return to Saudi Arabia in the spring.  I hope to spend more time and see more of the country while I am there.  I look forward to renewing and embracing the friendships I made there.  I am even learning Arabic.  Hopefully, my hosts will not be too alarmed at my terrible accent!

This year also brought me surprises.  In October, I was finally diagnosed with an autoimmune disorder.  The symptoms had been plaguing me for a couple of years, and I was suspicious. But nothing was definitive and so I just managed.  Finally, the signs were clear.  A diagnosis came, and with it the ability to manage the fatigue and pain and other seemingly random, but related, issues I was having.  The diagnosis is scary, but not life threatening.  It is mediated by my diet. So, I must watch what I eat.  I imagine my disease as immune cells roaming my body like marauding teenagers looking for a fight.  They have letters emblazoned on their t-shirts – T and B and M and NK – with little bands of cytokines following them around. But, instead of fighting the bad guys, they attack my gut and my joints with the smallest shove from gluten or almonds or soy or green beans(?), and I enter a cycle of pain and fatigue until they have all worn themselves out and need a nap. 

Becoming an autoimmune patient has been enlightening in its own way.  I immediately joined the Autoimmune Diseases Association (ADA) and took their survey.  Suddenly, I had a group to belong to.  In a strange, morbid way, I felt I had found a tribe that looked like me and felt like me.  But, we’re patients, and somehow that seems wrong.  I also feel a bit of guilt. I can manage my disease well. I don’t need much support.  I realized I haven’t even opened the envelope from ADA yet.  I’m not sure why.  I also wonder about why I joined ADA when I’ve openly struggled with anxiety for years.  It has never occurred to me to join a mental health patient group.  I know more about cPTSD and anxiety than most, but I have no desire to join my peers.  I suspect that has more to do with subliminal societal bias than need.  How tragic that I’d rather have an autoimmune disease and be a part of that tribe, than join my millions of brothers and sisters suffering with mental illness every day.  Perhaps that can be a journey I take this next year.

By far, the greatest surprise I received this year is the offer of a job I could not refuse.  I am beyond excited to be joining a company focused on patients and harnessing their experience for the greater good.  I did not think I would find a position again where I felt safe and valued.  I was wrong.  The best part is that I will continue my work on Patient by Design and my blog. I will also keep my consulting practice.  It’s a security blanket of sorts, and there are some things I want to do that are just my own.  I learned that lesson this year.  I learned that I can have ideas and goals and aspirations that are just my own and don’t belong to anyone or anything else.  I have a voice and I have important things to say.  I hope you will continue to listen as we move on into a new year with new surprises and new joys and new hurts.  It’s the journey that makes the goal worthwhile.