Who Are You?

“Who are you?” asked the most likely stoned caterpillar of Alice in Wonderland.  She gave her name, but that wasn’t what he meant so he asked again.  Faced with the same question, talking caterpillar or not, we all have to put some thought into an honest answer.

alice in wonderland

How do we define ourselves?  By our looks?  Our talents? Our passions?  Our career? Our relationships?  Our intellect? Our HEALTH?

I suspect our definitions hinge on what we value most in ourselves and even others.  What we do or don’t have in terms of physical characteristics, talent, success, possessions, etc.  However, unless you are on the extreme ends of it, health doesn’t even cross our minds.  There are those that work hard to be very healthy and as such health is often on their mind and therefore part of what defines them.  On the other side of the spectrum are those that suffer bad  health.  Although poor health does worm its way into part of our personal definition, it is a factor that most people who struggle with their health attempt to avoid.

She thinks about her health, but not the same way.

She thinks about her health, but not the same way.

There are those that were born with a debilitating disease and I suspect that their health being a part of their personal definition is less of a struggle.  They have never known otherwise.  Now I’m not saying they are happy about it.  I suspect anyone struggling with health would love to suddenly become healthy and leave that definition at the door.  There are also those that started out healthy or unaware of illness and then were surprised with a complete change in lifestyle due to health problems is a different story.

What do you mean I can't play baseball today?

What do you mean I can’t play baseball today?

Those of us that start healthy tend to be a stubborn lot that works hard to keep or get back to the life we once knew…and didn’t truly appreciate.  I will also admit that we can be a prideful bunch, keeping the gory details of our health struggles to ourselves.  Even though those who love us would never think less of us knowing all the indignities we suffer.  Our loved ones really do want to know what is getting worse and what is getting better, and maybe, hopefully, there is something they can do to help.  There usually isn’t much to do.  Most people I know just keep hoping that a magic wand will appear and all will be solved.  This magical thinking isn’t because they are lazy, but because we all realize there really isn’t anything they can do to change the situation.

If only it were that easy!

If only it were that easy!

Still many of us keep our silence, especially if things are getting worse.  Why?  Yes, I freely admit that some of it is pride.  That paper thin hospital gown is the least of our growing indignities.  We have to share the nitty gritty details of our failing health with our doctors, most diagnostic tests have absolutely no room for vanity as we are poked and prodded in all sorts of places that can be out of bounds even after years of dating.  We have to stand naked and let someone wrap recent surgical incisions with plastic and tape just to take a shower.  Pushing all that aside and trying to act like everything is normal, try maintain what dignity is left is completely natural.  However, I believe there is a deeper struggle determining the details we share with others—our  identity.

Hard to feel cool in situations like this.

Hard to feel cool in situations like this.

I worked hard all my life for the successes I have enjoyed.  My degrees, my world travel, my many adventures, my ambition and tenacity, even my piercings are the big things that I believe define my character.  Those are the things *I* have accomplished.  They demonstrate my character, my determination, even my struggles.  Equally the mistakes I have made identify who I am not.  I’ve made my way in this world just like everyone else, laughed and cried with the best of them.


To then suddenly be defined by something that is happening TO me is terrifying.  My health controls my life and I resent that plenty.  I don’t want it to be the first thing others think of when they see or discuss me.  My health it is not who I am, it is something that is happening to me.  Still, even I have trouble extricating my poor health from how I define myself.  So I shouldn’t really blame others for doing the same.  Of course, logic isn’t my strong point when it comes to my health.  I’m like a two year old, I want what I want regardless of whether it is reasonable or even possible.

It's not possible? But I want it...

It’s not possible? But I want it…

I feel like my life is split into two parts: before and after.  Before my health failed I was the girl that had accomplished more in 26 years than most people do in a lifetime.  Of course, after it failed, I can only think I’m very lucky I lived hard and fast those years because now my body makes so many things impossible. Even though my health gets the first say in how I live my life, I refuse to let it define who I am.  It may occupy my time and mind right now or even the rest of my life.  That is ok.  I will find other avenues to continue to be successful in my ambitions, creative in my spare time, and dedicated to my loved ones.  What about you?


About leitis23

I'm an adventure, living life to the fullest, and doing stupid things enthusiast, whose life took a serious left turn into chronic invisible illness. My saga of adventures in the world and in medicine never fail to keep life interesting.
This entry was posted in anxiety, chronic fatigue syndrome, Chronic Illness, Chronic Pain, compassion, conditions and diseases, coping, depression, Doctors, family, fibromyalgia, friends, friendship, health, helping, ilness, invisible illness, lost, love, lupus, Medicine, mystery diagnosis, Mystery Illness, pain management, practicing medicine, rheumatoid arthitis, understanding and tagged , , , , , , , , , , , , , . Bookmark the permalink.

8 Responses to Who Are You?

  1. charley says:

    I love your writings. Even at 61, I still cannot come to terms with this illness. I had to take a ‘character test’ today to remind me of who I am. I saw the chiropractor today, after not seeing him for about 8 months. I attempted to explain to him my absence, pursuing other alternatives in my quest to find ‘the’ answer. I fear I will go to my grave with my claws up, still struggling for me and my identity. So many of us struggle to find some semblance of who we used to be. Never give up on your ambitions or your creativity

    • leitis23 says:

      I would be proud to go to my grave still fighting. Thank you for reading. I’m glad you enjoyed it. It’s always nice to know we aren’t alone.

  2. bshalev says:

    I’ve only just started reading your posts and don’t know the backstory, but I appreciate and empathize with everything you’ve written. And I join you in the struggle with a chronic invisible illness, but mine has ‘come to roost’ only recently. Like Charley I’m 61 and like you I’m grateful for all that I managed to do before I was sidelined. My fertile imagination also led me to believe that I had a few more good years of activity and adventure left, after taking such good care of my health for so many years – or so I thought. I can’t imagine what it would be like at age 26 (did I understand that correctly?) Yep, still searching for ‘answers’ and that’s a long-term project whether we’re sick or not. I’m discovering Buddhism for the first time in my life and finding lots of strength and solace. Ram Daas “Still Here” is a good read for starters and lots more if you now find yourself like me with more time on your hands. Thanks again; look forward to reading and sharing more.

  3. leitis23 says:

    You can find the back story on the link at the top of the page that says my story. Yes you understood that right. My health went sideways at 27, I’m now 35. Took me a long time and a lot of struggle to get what little understanding I have. If you look through the archives I’ve covered a lot of topics. Thanks for reading and commenting.

  4. Deb D says:

    What a great post. You have really described how many things I have thought over the years. I was 44 when my life took that turn to a chronic, invisible illness. Lately, some 10 plus years later, I have come to many of the same conclusions as you, especially that people truly fear losing their health and therefore avoid us “unhealthies” so that their own possible decline is more nebulous in their minds. It is a vicious cycle for sure. Thank you for a wonderful post.

  5. Another great post. You write like you must have ridden your motorcycle–like a hot-rodding angel. Thank you for having the courage to put your thoughts out there.

  6. Mary says:

    I agree with very much of what you’ve posted, I can relate so very much as well. But, there was one paticular statement you made that is deterring me to share my years and fact ehind my chrnic pain, in which I’ve been living with for 21yrs. After I read the first part of ‘Then Everything changed’ you stated that you felt pain medication isn’t benificial, and that’s cool and i respect your opinion. I am very observant and you actually contradicted ÿourself in the second part of part of your thoughts on pain medicine. Therefore I chose not to share my experiences. I will close this by saying that I wish the best to y’all…Peace

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