Medicine X 2014: It’s Okay Not To Be Okay

I had the honor of attending the Stanford Medicine X conference in California this past week. 

Why that title – “It’s Okay Not To Be Okay”?  Because that is truly the most important thing I took away from my Medicine X experience.

Returning from Michigan to New York after my Dad died, I had a much smaller support system than I had in Michigan.  And initially, I felt like I was going to California in a fog.

I knew I had to get on a plane to go to a conference, but beyond that, my mind was in a million other places, not least of which was making the decision to still attend Medicine X, after my Dad’s death just three weeks earlier.

So I went to this conference, and I was not okay, not by any stretch of the imagination.

But it turns out that this was probably one of the best things I could have done for myself, not just in general, but especially during this difficult time. 

Because Medicine X is a judgment free soon.  In terms of the patients at the conference, we all have our things – whether it’s lupus or RA, wearing a prosthetic, or having a rare disease that no one, not even doctors, have ever heard of.

It was the first time since being back from Michigan where I didn’t feel like I had to lie and tell people I was okay when I really wasn’t. 

Medicine X is an environment that boosts you up, makes you feel like you are not alone.   

I was truly inspired by the people I met there.  In fact, I am really at a loss for words to describe the transformative experience that was Medicine X. 

And it was hard coming back to reality.  To a world with no wellness rooms, where people can’t just look at you and know you need something, and don’t look down on you because of it.

Most of the people that I hung out with at Medicine X were younger than me, and I was amazed to the degree that they have their shit together.  When I was their age, I was newly diagnosed, and questioning every aspect of my life – and at times, whether or not I wanted to live it.

Those were dark times for me.  And maybe my life would have been much different had I discovered Medicine X then.  But it has certainly changed my life now, and completely for the better. 

There were definitely some doctors that were more evolved than others.  But honestly, while it was nice to be able to engage with medical professionals and pharma, it was the patient interactions that really meant the most to me.

When I had a meltdown during the pre-conference day, before I knew it, people were huddled around me, seeing what I needed and what they could do.  And that was enough.  To be surrounded by people I had literally just met, really meant the world to me.

And my mom and boyfriend both commented that I haven’t sounded this happy in a long time.

I was worried that with life having other plans, I wouldn’t be that into the conference, but I really was.  And I know that my Dad would have been proud that I went, despite everything that has happened in the last month. 

And ultimately, I’m glad I went.  I made new friends.  Not just superficial see-you-when-I-see-you friendships, but I barely-know-you-and-I-still-bore-my soul. 

Most importantly, I met people like me.  I was able to be myself, warts and all, and I learned how connected our patient stories are, whether we live across the street or across the world. 

There are many people I have to thank for making this experience one of the most influential in my life, to date.  But I’m only going to name one of you, so I don’t inadvertently forget anyone. 

I have to thank my roommate, and now kindred spirit, Emily Bradley (A.K.A. ChronicCurve).  You said that Medicine X places you with a specific person for a reason, and I believe that 100%.  I couldn’t have had this Medicine X experience without you and am truly grateful to know you (you’re kind of like the undergraduate version of me).     

I received a very generous scholarship in order to attend Medicine X as an ePatient Delegate.  So of course, I have to thank the organizer of Medicine X, Larry Chu, the ePatient Advisory Board, and anyone else behind the scenes who made it possible for me attend. 

If you want to gain more insight into my Medicine X experience, hop over and take a look at my Twitter feed (@LeslieRott). 

I can’t say enough about this experience.  It’s really hard to put into words.  But I will say, and hope I can say, that I’ll see you next year Medicine X, and I’ll be prepared to bring my A game. 

The title of this post was inspired by Britt Johnson (@HurtBlogger) and Joe Riffe (@ProstheticMedic), and the song “Who You Are”, by Jessie J:

“[…] Don't lose who you are in the blur of the stars!
Seeing is deceiving, dreaming is believing,
It's okay not to be okay...
Sometimes it's hard to follow your heart.
Tears don't mean you're losing, everybody's bruising,
Just be true to who you are! […]”