The 18 Thoughts for 18 Years of Living with Chronic Illiness/Pain

When you live with chronic illness and/or chronic pain, you learn a lot about yourself and your body.  You learn about the limits of humanity, of your own finances, and your emotional limits.  You learn about the difference between thrive and survive.  This isn't a finite list, and I'm sure I could come with way more than 18 lessons, but here are the ones that stuck out to me the most in the moment:

1. I'm really in tune with my body.  I can tell when I'm about to have a flare hours or days before it starts. With just one bite I can tell that a particular food will upset my gastroparesis.  I just know.
2. I have no idea what my body is up to.  My body does things without consulting me or giving me decent notice.  Flares start with no reason or indication.  Is that an interstitial cystitis flare or a UTI?  Why did I not sleep?  Why did that food upset my GP?  Friends and family ask, why?  Absolutely no idea.  Because it's Tuesday.  Because Mars is in retrograde. 

Why I'm Not Defined by My Chronic Illness

Until quite recently, I have avoided thinking too much about chronic illness and it's impact on my life.  I didn't want to become one of those people.  You know, those people whose chronic illness or disability becomes the soul of their identity. I thought it was either/or.  I didn't understand that identity could be a spectrum that is continually fluid.

This process of not only thinking about my identity and chronic illness, but documenting my thoughts in a cohesive way has been incredibly therapeutic.  I reflect, write, re-write.  I have drafts of thoughts, feelings, and events that I may never share because I can't figure out how to coherently express it.  No matter what, it's helped me process through a myriad of emotions that have been long lingering under the surface.  I feel like I'm letting parts of me free.

An Open Letter Regarding Lady Gaga

I made a bad decision the other day: I decided to read the comments in an about Lady Gaga's decision to cancel the rest of her tour due to severe pain.  And let's have an honest moment where we all recognize that reading comments is often a bad idea, right?  The negative comments seems to be in three parts:

1. Fibromyalgia isn't real
2. Fibromyalgia is real, but she's a wimp/diva 
3. Fibromyalgia is being used as an excuse to do something else. 

As for #s 1 and 3, I just don't have time for these people.  What enraged me was the woman who stated that she has fibromyalgia, but still makes it to work each day and if she could do that then Lady Gaga could finish her tour.  That it was a combination of fame and money that allows Lady Gaga to play the diva and leave thousands of people in the lurch for hotels booked and flights arranged in order to see her show.  That she was being a wimp.

On Finding Your Person

In Grey's Anatomy, Meredith and Christina call each other "my person."  My person gives me context, affirmation, and a sense of sisterhood.   I was lucky enough to find her in college.

My person is my best friend.  We don't talk every day, and frankly weeks and weeks can go by where we don't talk.  Some weeks go by and all we've done is send one another memes. 

But my person gets it the way others don't.  She has her own myriad of chronic illnesses.  We know what it means when the other person says "I'm having a day."  

Am I in Control of My Body?

Compared to many, my chronic health issues are almost embarrassingly in check. I take my meds. I try to keep to a sleep schedule. I’m not regularly in substantial amounts of pain, and in fact have good days where pain isn’t a factor at all. I’m able to hold a well paid full time job with great benefits.  I miss maybe one day a year due to actual chronic illness related concerns. I know, compared to many, I am very, very lucky. 

Dating, Disclosure, and the ‘Me’ness of Being Me

I have a hard time with dating and living with chronic illness, especially when it comes to disclosure. When do I disclose? Does my potential dating partner deserve to know prior to making a commitment? Do I owe disclosure to them? Do I owe it to myself? I end up waffling around, sometimes disclosing prior the first meeting, and sometimes after several weeks of dating. Sometimes I end up having to disclose before I would like, but I find it hard to have a flare and not explain it.

Because these names, these chronic illnesses of mine, they are a part of me. They don’t define me.