Define Yourself Before The World Does it For You!

Last year, I was recording an episode of the Major Pain podcast hosted by Jesse Mercury.  Jesse was walking me through the format to get me comfortable, and let me know that the first thing we address is an introduction.  Who are you without your disease(s)?  It was at that moment that I realized that I don’t have the answer to that question. How can we define ourselves outside of our rare disease?  I woke up the next day, my mind swirling with HOD, HODA, and WHO AM I?  I asked my husband, “If you strip away your vocation, who are you?”  With that, I successfully got two heads swirling.

OK, but how did you define yourself BEFORE all of this?

Before all of this happened to me, I was a Senior Credit Account Manager over my employer’s largest clients.  I had a lot of pride and identity wrapped up in that.  I was (and still am) Wave’s wife, Lily’s mom, Kriston’s stepmom, an animal lover, a sister, a daughter.  But I realize that all of those things are just relationship titles.  Who you are is so much more than the titles that are bestowed upon you.  I am a bit embarrassed that I can speak on Cavernous Malformation, Hypertrophic Olivary Degeneration, Finance, Credit, and Accounting for hours, but I can’t talk about myself for more than a minute.  I am not ashamed of who I am I truly don’t know what to say.

In the podcast, I introduce myself as a 46 year old woman with two daughters, two dogs, two cats, and a husband. Just an average person trying to make their way in the world.  This was my feeble attempt to define ourselves outside of our rare disease. Without these diagnoses, who am I?  I was intrigued by this question. In typical Chris Coates’ fashion, I challenged myself to figure that out.  I can fully appreciate Tina Turner’s monologue before belting out “Proud Mary”: 

“We never ever do nothing nice and easy.  We always do it nice and rough!”

I have been known to be a bit hardheaded, and I don’t seem to learn anything from taking the easy way out.  I wish I knew why I was this way.  Nevertheless, I suppose I can add that to the list of who I am.  Hard Headed.  Check!

Getting Honest With Myself

The thing about defining who you are is that it isn’t just the things you like.  I love that I am curious, and hardheaded, and loyal, and empathetic, a good listener, an advocate, and a friend. There are things that I am not fond of, too! I hate that I am easily duped, a people pleaser, that I am sometimes salty and cynical, and that my patience wears thin at times.  I don’t like that there are certain people that I allow to continually disregard my boundaries with no consequence. 

It is commonly accepted that with anything good, there is also bad.  It is difficult to look at the bad.  I have learned to tolerate change, but as I list out the traits that I see as ‘bad’, I don’t seem willing to make changes at this point.  After all, who wants to be around someone with only good traits?  I know I don’t.  That is boring.  And why are these traits viewed as bad?  Viewing everything through the lens of a dichotomy is detrimental.  Maybe this all begins with the understanding that there is no ‘good’ and ‘bad’.  If I can shift the way I see my attributes to neutral, then it may be much easier to figure this out.

Finding Neutral Ground

Moving into neutral territory may be the answer to the polarizing shifts that have been plaguing our little corner of the solar system lately. This is where my impatience comes in to play. I am a ‘live and let live’ kind of person.  When a leader intertwines their religious views and/or political views into their work, I believe that they have lost sight of their initial mission, and moved into the persuasion business. I know that no matter how I feel, or how I vote, I will not change anyone’s mind.  We are each shaped by our world view and our personal experiences as we walk (or roll) through this world and our lifetimes.  

How I Am Defining Myself Now After a Personal Inventory

So where does that leave me?  Who am I? 

• I am a kind, compassionate advocate, who is a great ‘starter’ and ‘finisher’. 
• I pride myself on being unique and witty.
• I am an empathetic listener, who says silly things sometimes, and I acknowledge my imperfections. 
• I am an observer of others.
• I enjoy conversation, even though it takes so much of my energy.
• I like making new friends and hearing their stories.
• I am great at giving advice, but not so great at heeding my own advice. 
• I am a trailblazer.
• I do not suffer fools.
• I am a problem solver.
• I am a person who hasn’t always lived up to my potential. 
• I am a person who has walked through the figurative fire.
• I am a person who has a small circle of friends, and I love each of them for who they are.
• I am a person who can get their feelings hurt.
• I am confident, and I have imposter syndrome. 

Like all things in life, above all else, I am complicated. Look at us, working to define ourselves outside of rare disease!

How do you define yourself outside of HOD? Tell us in the comments!

Would you like to contribute a blog post about your life with HOD? We can help you! Drop us a line at ContactUs@HODAssoc.org