Why My Illness Defines Me

As a subscriber to various chronic illness forums, I often hear the phrase, “My illness does not define me.”  I have pondered on that statement and asked myself the same question.  Does my autoimmune disease or POTS (Postural Orthostatic Tachycardia Syndrome) define me? 

When I look at my life today, I can’t seem to separate myself from my illness.  I am still me, but I can’t deny the effect of my limitations or the experiences caused by my disorders.  Certainly there are moments in my timeline that only exist because of my sickness.  In fact, most of my experiences these days are defined (or confined, rather) by my illness.

Many of these events and the memories they have produced have not been wholly positive.  For example: 

• Every time I go out in public in my wheelchair wearing knee-high compression socks, dark sunglasses, and noise-cancelling headphones and feeling awkward and conspicuous.  

• That embarrassing time that my wheelchair hit a bump, tipped over, and I found myself prostrate on the asphalt in a crowded venue and unable to get up. 

• That time that I had a decent day and thought I was doing well enough to attend a friend’s party, only to become a public spectacle when I passed out on her couch.

• Or that time that a stranger patted me on the head and told me I was a “pretty girl”-- as if he were speaking to a child or someone mentally handicapped just because I was in a wheelchair.  (I’m sure he had the best intentions…)

• Or those multiple times before my diagnosis when various health care providers accused me of being drunk (I’ve never had a drink in my life), on drugs, or needing a psych consult because they couldn’t figure out what was wrong with me.  And that one doctor, in particular, that got up in my face while having a cataplectic, adrenaline-dump, pseudo-seizure attack in the ER, and started yelling at me that he knew I was “faking it.”

• Or the many, MANY times that I have missed out on my kids’ recitals, performances, games, graduations or family activities and vacations because I was too sick to attend…. Those are the hardest.

These experiences have all been defined by my illness.  But what about me, myself?  Am I defined by my illness?  

I recently saw a quote by Brené Brown that helped clarify this question for me.  She said, “The irony is that we attempt to disown our difficult stories to appear more whole or more acceptable, but our wholeness—even our wholeheartedness—actually depends on the integration of ALL our experiences, including the fails.”

Having POTS has definitely changed my life and changed me with it.  It has made parts of my life harder.  It has provided unsavory experiences (as aforementioned) that I never want to endure again, and some that seem to be stuck, like Groundhog’s Day, on repeat (like waking up feeling disoriented, sick, and drugged every single day). 

But it is not all bad.  Having chronic illness has also refined me.

• Having a chronic illness, and all the experiences that come with it, has made me more compassionate and more empathetic towards others.  I understand what it’s like to not feel whole, and my heart aches for others that are struggling. 

• Having a chronic illness has increased my gratitude.  I have such an appreciation for the little things in life that I used to take for granted.  I am grateful for good days and precious time spent with my kids, family, and friends.  I relish the moments I get to snuggle my kids and celebrate when I feel good enough to leave the house (and return home again without major incident).  

• Having a chronic illness has humbled me.  It’s a difficult thing to not be self-sufficient all the time.  It’s hard to rely so much on others and to accept help when needed.  (I’m still often stubborn.)  It has helped me realize that we are all in this together—to lift and help each other, which has also increased my desire to help and serve others in the ways that I can. 

• Having a chronic illness has allowed/forced me to be creative.  Being a busy-body that has had to spend so much time in bed has forced me to figure out things I can do from bed to feel productive (like write a blog) and search for ways to still feel useful in helping my family and others when I can’t physically do as much.  

• Having a chronic illness has taught me that I can’t take myself too seriously.  For example, when I couldn’t physically walk from one room to another, I had to laugh when my husband had to drag me around on a blanket (mostly so I wouldn’t cry).  I also don’t worry about wearing make-up, doing my hair, or looking nice most days because what little energy I have I prefer to put towards time with my kids, or working, or trying to exercise to help myself improve. 

(I'm gonna admit it... I feel super vulnerable posting this picture
because I still struggle with the image of myself in a wheelchair.
Something I'm still working on...)

• Having a chronic illness has forced me to de-stress.  Pre-POTS I was always a mover and shaker—as well as big ball of stress.  Patience has never been my virtue and sitting still was not a thing I could abide well.  Although I had health issues well before my “great POTS crash of 2015,” I didn’t allow myself the time to rest and recover as I needed.  I pushed through until my body finally gave out and I couldn’t push anymore.  Learning to let go of all that stress I carried around was HARD.  But I now see that a lot of the things I used to worry about, don’t really matter.  And, in many ways, I am a happier person for that.

• Last but not least,having a chronic illness has increased my faith I have always had a strong testimony, but through my experiences, I’ve had to rely even more on my Heavenly Father and my Savior, and I have seen their influence in my life each and every day.

So back to my original question—does my illness define me?  While I am certainly more than just a girl with POTS (or a “pretty girl” in a wheelchair), chronic illness has certainly played its role in making me who I am today —or at least clarified the parts of me that needed a stronger definition.  So my answer to that question would have to be a resounding yes.  It DOES define me.  For better and for worse, my illness is part of me, perhaps just one part, but it has defined my experiences and my life, which in turn, have refined and defined me.