What's in a Name? The Power in Naming Your Health Condition

I once read that it was helpful to be able to specifically yell at your illness or health problem.  Please, don't ask me where I read this, I have no idea.   But the point of the article was that there was power in naming whatever "it" was, both in terms of diagnosis but also in having something specific to direct your frustrations towards.  That you'd have a name to literally yell at.

At the time I only had fibromyalgia - now, that's quite the fancy name for this not so specific problem, but it was also a bit a mouthful.  And what would I be even yelling at?  My back pain?  My brain for not letting me fall asleep?  It felt...not quite right and lacking specificity.

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. 

The Start of a Fibromyalgia Flare

Flare is such an apt name for it, as it seems to start small and comes out of nowhere, but grows shockingly and becomes all consuming.  In many ways, it consumes me.

Questioning Pain

We learn at an early age that pain means something is wrong.  That pain is indicative of an infection, an injury, or an illness.  That it's something that is fixable with an aspirin, antibiotic, a bandage, a doctor's visit, or a cast.  That the doctor could feel the heat radiating from the sprain, see the muscle tear on the MRI, the fracture on the X-ray, or diagnose painful strep throat from the swab.  We're told that it hurts now, but it will feel better.

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.