She Said the Thing

The truth of chronic illness

This past week, I had what I thought was going to be a routine session with my acupuncturist and Traditional Chinese Medicine practitioner. It ended up everything but routine as that morning ended up being “one of my bad days” with unexpected and anxiety provoking symptoms. The acupuncture treatment helped ease the symptoms and Megan gave me instructions to follow up with my primary care doctor “just in case” there is more that needs to be explored. (My primary care and I are currently exploring a possible thyroid issue.)

It wasn’t this that made this week’s session remarkable, however, it was the thing Megan said. I’m not going to be able to repeat it verbatim but it was the exact acknowledgement that I needed to hear. In her compassionate seeing, Megan recognized the very real fact that most of the time, I feel like shit. Following that up with the masking that I do to make it through each day despite feeling like shit. I took Megan’s hand in mine and through tears, thanked her for SEEING ME.

Because this is the reality, I do feel like shit pretty much every day. Between Epstein-Barr, permanent vestibular neuritis, panic attack disorder, being a highly sensitive person, neurodivergent, and having polycystic kidney disease, my baseline is somewhere around 50-60%.  I’m tired and cold all the time. I’m always suffering some version of mild vertigo (giddiness). My chronic headaches have been better, but as I write I’m on day 6 of a constant dull ache. I’m on all the medications to manage my kidney disease, and every one comes with their own set of side effects. Ugh.

I don’t write this in search of pity. I share this to reveal the whole truth about chronic illness and to point out that we live in a world that has no real support for the chronically ill. Instead, we’re forced to put on a happy face, go out into the world, work to earn money to pay our bills, grocery shop, exercise, stay fit, eat right, and not complain about the fact that while we are doing all these things to make it in this world, we often feel like complete shit. Pushing through the pain, fatigue, etc. then just makes us feel worse.

The chronically ill are invisible in our world; and yet we make up 60-90% of the American population. This means that every day, 60-90% of the people we encounter are feeling like complete shit while trying to complete the tasks required of them in a capitalistic culture. Other than disability income (which very few qualify for), there are no safety nets. Zero. Zilch. Nadda.

I can’t speak for others who suffer with chronic illness, but for me, I’ve carved out a way to make a living that (somewhat) accommodates for my vulnerabilities. At the same time, it is a constant effort to show up for work. I’m fortunate to have clients who understand if I have to miss a day or reschedule.  Making this choice, however, costs me in real US dollars so I reserve that right only on my worst days. Often I show up even when feeling like I really just need to stay home and do nothing or sleep. I’m also grateful for the unexpected and often miraculous ways that financial support shows up, allowing me to be more gentle, compassionate, and caring toward my fragile body.

And today, I’m especially grateful to Megan Bartelt, L.Ac. Dipl. Ac. for through her words, I am finally feeling seen. 

Not Everything is a Trigger

The other day I was accused of having been “triggered” by a comment that was shared on Facebook. According to definition, a trigger is:

a stimulus that elicits a reaction. In the context of mental illness, “trigger” is often used to mean something that brings on or worsens symptoms. This often happens to people with a history of trauma or who are recovering from mental illness, self-harm, addiction, and/or eating disorders.  (https://campushealth.unc.edu/)

Here’s what happened. Someone on Facebook initiated a post that said, “if you have to refill your prescription, this is proof it’s not working.”  The post then went on to suggest that there was some alternative path that would cure the condition for which one is taking a pharmaceutical medication.

First of all, this statement is medically incorrect. Secondly, I find it dangerous and irresponsible for someone who calls themselves a medical practitioner to make these kinds of claims. As one who relies on certain pharmaceuticals for my survival, I felt compelled to share my personal experience. That is all I did.  I didn’t tell them they were wrong. I didn’t slander or insult them.  I simply stated that in my personal experience, and for me personally, prescription medication is often helpful and sometimes necessary. I then explained my condition (polycystic kidney disease), along with all the alternative and wholistic treatments that I have and continue to utilize, thereby providing an integrated approach to my care. I am a sound advocate of authentic wholistic treatments and practitioners of these modalities. I also recognize that allopathic medicine has its place and is necessary in some (many) cases.

The person who initiated the post replied by dismissing what I said and then accusing me of being triggered. “I see you’ve been triggered.”

NO, I was not triggered!  I simply shared my own personal experience.

Trigger has become a hot topic in social media and elsewhere. The benefit is that as a society we have become increasingly aware of and sensitive to the fact that people have suffered trauma and that there are events, experiences, etc. that can illicit a trauma response that can prove harmful to the individual trying to recover from past traumas. The drawback is that there seems to be a growing trend of people throwing around the word “trigger” like rice at a wedding. Some use it to escape responsibility. Others use it to dismiss another’s experience. Some use it to feed their inner victim. Trigger as a clinical term is most appropriately used in the context of trauma and really should not be used in any other way.

Beyond the clinical definition, trigger may simply be understood as something that elicits an emotional response. As much as a trigger can arise out of trauma, it can also arise simply to get our awareness (though I wouldn’t really call it a trigger, instead, simply the body signaling for us to pay attention).  Case in point, I had no trauma reaction to the pharmaceutical post, but what I did have was a clear and definite spark from my truth barometer.

Unfortunately, we live in a culture that beats this truth barometer out of us, rather, it conditions us in such a way that we a) have forgotten how to hear that inner sense and/or b) we have learned not to trust it. For my whole entire life, I have had a strong truth barometer, but like most, was told along the way that it was invalid, or incorrect, or that I simply couldn’t know certain things that I know. Well…I have worked long and hard to reclaim that voice and I adhere to it and trust it every single time.  Am I sometimes guilty, even now, of ignoring that voice? Absolutely!  But when it really wants my attention, it tells me.

What my truth barometer told me in the case shared above is that the information shared was incorrect, arrogant, and dangerous. I said none of this to the poster. I’m not here to change other people’s beliefs. I did, however, feel like I had a responsibility to share (for others who may have seen the post and who are equally enjoying the life-saving benefits of pharmaceuticals) my own experience. My sharing was civil and respectful. Apparently, the poster didn’t think so. Instead, she accused me of being triggered, dismissed my personal experience, and then claimed to have a cure for what ails me. In doing all of this, she effectively avoided any personal responsibility for what she shared.

So… yeah….. Not everything is a trigger. Sometimes what some might interpret as a trigger is simply our inner truth calling out bullshit!