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. 

Is it Vestibular, PTSD, HSP, or Empathy?

Yesterday, I had to leave work early. I had to leave out of a combination of stimuli that triggered – perhaps all – of the conditions I have: chronic vestibular neuritis, PTSD, HSP (highly sensitive person), along with my ability to feel the energy and emotions of others (empathy) so much so that it overwhelms my nervous system. The result was a combination of overwhelm, PTSD symptoms (inability to concentrate, focus, etc), anxiety, and a blaring migraine with a bit of dizziness. While any one of these conditions could have caused the symptoms I experienced, upon reflection, it was a combination of stimuli and conditions that created the perfect storm, making it near impossible for me to continue working while the stimuli not only continued, but increased. Thankfully, I have an understanding employer who is fully aware of my sensitivities and the deficits that sometimes accompany this combination of sensitivities. My work is also flexible, some can be done from home, and my responsibilities for that day were relatively minimal. My employer gave me a supportive smile when I told her I was going home, as she was aware of the challenges I was facing that night.

Not every employer would be so understanding or supportive.

I know I am one of the lucky ones.  In America, 2% of the population are considered empaths, 6% will have PTSD at some point in their lives, 15-20% are diagnosed as HSP, and over 35% of adults over the age of forty suffer from vestibular disorders. I suspect these figures are understated! My point is that a whole lot of people suffer from one or several of the conditions with which I sometimes struggle, and very few employers are understanding of or willing to make accommodations for said-conditions. With none of these conditions does one appear “sick.” For most of these conditions the symptoms are difficult, if not impossible, to describe, causing many, including medical professionals, to believe the issues might be “in your head.”

Literally, vestibular disorders are in our heads! For myself, I have chronic inflammation of the vestibular nerve which makes me sensitive to movement, sound, smells, lights, barometric pressure – and so much more. When I’m “triggered,” the results vary. Sometimes I just feel icky. Other times I’m bowled over by vertigo. Sometimes the vertigo isn’t full-on spinning, just a feeling of disorientation or unease. I sometimes get aura migraines, and other times full-body migraines where I can do nothing but lay on the couch with lights off and a blanket over my head. I NEVER know when the symptoms might arise but there are certain things that are consistent including driving (especially at freeway speeds), snow and rain, windshield wiper movement, low barometric pressure, and red wine. Ironically, red wine is also one of the remedies I have found for when I have a full-on migraine. Weird.

PTSD is even more subtle for me and thankfully with medication I haven’t had a panic attack in several years. I continue, however, to find myself sensitive to crowds, loud noises, a multitude of stimuli, and certain situations and/or conversations. One thing I’ve come to notice, which I don’t remember having before the experiences that brought about the PTSD – I now have some sort of auditory processing disorder – which could also be related to the vestibular issues. The disorder goes like this: if I’m in a crowd of people and someone, or multiple someones are talking to me, I literally can’t hear them.  All I hear is “wha wha wha wha.”  As one friend described it  – “Charlie Brown’s teacher.”  I can hear the sounds, but I cannot make out the words.  For years I thought I was hard of hearing.  My hearing tests all prove to be in the range of normal, and yet, these symptoms persist.  As an office manager, this condition makes my job difficult and overwhelming at times, and I have to repeatedly ask people to repeat themselves while explaining about the processing disorder.

As it relates to HSP and being an Empath, (insert shoulder shrug emoji).  If you are either of these, you get it. If not, there’s likely no way to explain it. The best way to describe both of these is that I feeeeeeeeeeeeeeeeeeeeeeeeeeeeel  everyyyyyyyyyyyyyyyyyyyyyyyyyyything. Your emotions. Sometimes your thoughts. Pending earthquakes, hurricane, or other global phenomenon. I sometimes know when something bad is about to occur. I can read your energy. I feeeeeeeeeel if you are a good or bad human being. I can tell by your body language if you’ve been abused. Sometimes I see it. It’s bad enough when it’s only one person I’m feeling, or one global phenomenon…….but if it’s a room of people or the whole planet is losing its shit, it becomes overwhelming which makes it difficult to stay fully present, to think clearly, and to remain focused. On some days it’s so bad that I can’t perform normal administrative tasks or even read a book or magazine for pleasure. After periods of intense stimuli, I just don’t have the bandwidth.

So yeah…….with (what felt like) a hundred people in the building and their children talking, making messes, asking for attention, some of them screaming…..I had had enough. Was it due to vestibular issues, PTSD, HSP or Empathy?  The answer is YES.  All of the above.

Again, a huge thank you to my employer and for the universe who put me in their path so I could have a supportive place to work from which I could escape if things become too intense. And my heart goes out to those who aren’t equally supported in their place of employment or who struggle to find employment due to what can often be debilitating symptoms – symptoms that are so invisible that disability won’t even take a look at them.

When the Rejected Becomes the Cornerstone

This week I was given a lived experience of a lesson I had planned for my online community. Instead, of being able to present the lesson, however, I was writhing on my couch in the lived experience of it. Interestingly, it is not unusual that I am required to live out a lesson before I’m able to share it.

The lesson I had planned was based on the following psalm:

The stone which the builders rejected has become the cornerstone.

Psalm 118

The Stone

This is how I came to live out the planned lesson:

I have a medical condition called chronic vestibular neuritis. What this means is layperson’s terms is that a virus caused permanent damage to my vestibular nerve.

From Wikipedia: The vestibular nerve plays an implicit role in maintaining blood pressure, maintaining balance control, spatial memory and spatial navigation during movement. 

Damage to the vestibular nerve can lead to intermittent and ongoing issues of vertigo, giddiness, sensitivity to light and sound, and migraines. This is exactly how I have experienced this disorder. I’ve exhausted all efforts in seeking a cure or effective treatment and have found neither. Instead, I’m stuck with the reality of this disorder:

  1. Due to this disorder, I can no longer drive on highways or long distances.
  2. Due to this disorder, I am often stricken with giddiness (feeling unbalanced, dizzy, or light headed).
  3. Due to this disorder, I am sometimes stricken with an excruciatingly painful migraine that might be limited to my head and neck, or sometimes encompasses my whole body.

Changes in barometric pressure or dramatic weather changes can trigger my symptoms. Wine is sometimes a trigger. Poor seating ergonomics and too much time on my computer are also triggers. Sometimes I can’t point my finger at what the cause might be. The position of the stars? A comet flying past? Solar flares?  Who knows!?

The Rejection

This week I was struck by the symptoms of this disorder and was forced to spend two days on the couch.

To say I hate that I have this condition would be an understatement.  Since 2016, when I was first stricken with the virus that caused vestibular nerve damage, I have struggled with the ongoing and intermittent symptoms. Mostly I have struggled with the limitations caused by this disorder.  I hate that I am no longer free to just get in my car and drive where I want.  I hate that I have to ask my friends or my children to drive me. I hate that there are some days when even local driving is excruciating – like on those bad weather days where the wind is blowing, snow is pouring down, and my windshield wipers are going. Between the pressure and the movement, I feel like I’m going to die.

My overachieving workaholic “needs to be productive to feel valued” self, hates that there are many days where I am completely unable to work because the pain, the light, the sounds, the smells, and any kind of movement forces me to retreat into darkness.  I writhe in pain while wallowing in the inner voices of chastisement telling me I’m being weak and lazy for not pushing through the pain to get things done. UGH!  (Who said the “protestant work ethic” was a good thing?  I’m not even Protestant!)

In short, chronic vestibular neuritis and all its accompanying symptoms has been a stone that I have rejected. I have hated this about myself. I have been frustrated at the medical professional’s inability to offer me an effective treatment or cure. Even the diagnosis took years to confirm (I knew what it was through my own research YEARS before my doctor could tell me what it was!). I have grown tired of all those well-meaning folks who try to offer up their own cures and treatments for something about which they do not know.

The Cornerstone

During all these many years of rejecting the stone of vestibular neuritis, has also been the whispering invitation of surrender and acceptance. After exhausting all other efforts, what choice does one really have?  I can continue to be angry, frustrated, resentful, impatient, and condemning of my symptoms, but what good does that do me?  Instead, (along with the accompanying symptoms of grief) I have tried to look at what this disorder might be inviting me into.  The invitation is really quite obvious and is known in what the disorder has forced me to do:

  1. Be vulnerable and humble enough to ask for and accept help with those things I can no longer do for myself (like drive).
  2. Take advantage of my good days. Do what I can do, without pushing myself and let go of the rest.
  3. Surrender to the bad days. It’s ok to do nothing. It’s ok to cancel plans. It’s ok to forego commitments.

The more subtle invitation has been to reorder and restructure my life away from my workaholic tendencies, and toward a gentler, more ease-full flow. No longer do I feel the need to fit into the standard American model of work. I have more and more fully embraced the fact that I couldn’t work a “regular job” if I tried. Only in running my own business do I have the freedom to work in a way that is necessary to maintain my health (oh yeah…..there’s that degenerative kidney disease I have too) and respond to my unpredictably changing symptoms.

In doing this, the rejected stone of chronic illness has become the cornerstone upon which the current foundation of my life is established.

What have you rejected about your own life experience that might be seeking to become a cornerstone?


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Protecting Our Magic

Do you ever get the feeling you weren’t really made for this world?  That this world simply feels too loud, violent, harsh, bright, etc. etc. etc.?  Me too!  Do you suffer with symptoms that might indicate that this world is indeed too harsh for you?  Symptoms like anxiety, panic attacks, vertigo, unexplained pain, fatigue, depression, sun or light sensitivity, tinnitus, migraines, or any other number of “unexplained illnesses with seemingly no cause and definitely no cure?” Me too.  Do you find it (increasingly) difficult to be around people and have an aversion to crowds?  Me too!  Have you been told there might be something wrong with you?  That you need to seek medical or psychological help to overcome your symptoms?  Have you been told to just get over it? Do people look at you like you’re nuts when you try to explain these symptoms and how they make you feel?  Have you been tempted to believe these voices because it’s what our society tells us as well?  Yep.  Me too!

What if there is ABSOLUTELY NOTHING WRONG WITH YOU and the “symptoms” you are experiencing are your body’s way of telling you the world is wrong and that it has the potential to cause harm to something precious and sacred inside of you?

What if your “symptoms” are not a disease,

but instead are signs of your magic?

On day five of a full body migraine, with no evidence of a cause and no sign of a cure, this is what I am considering.  What if all the symptoms I’ve been trying to manage or make go away (migraines, physical pain, intermittent vertigo) are signs of my magic – magic trying to be made known while also seeking my protection.

The truth is, I’ve been so busy drinking the patriarchal Kool-aid (work= success, hard work = more money, doing has value, being is laziness), that I have missed the opportunity to see these experiences in another light. To see these signs in another light, we must ask ourselves what magic needs?  This may differ from person to person, but for me,

My magic needs:

  • Solitude.
  • Quiet.
  • Gentle movement.
  • Stillness.
  • A safe place to live and work.
  • Deep listening.
  • Deep seeing.
  • The freedom to do things in my own way and in my own time.
  • People with whom to share my magic.
  • Vehicles through which I can share my magic.
  • A simple lifestyle.
  • Honesty.
  • Integrity.
  • Authenticity.
  • Sacred practice.
  • Meaningful and purpose-filled work.
  • Loving friendships.
  • Sacred community.

Recently my magic has also reminded me to bloom where I’m planted and has done so forcibly by making it impossible for me to stray far from home (without my protective charioteers).

(The travel thing is the hardest thing for me right now!  I want the freedom to go where I want to go when I want to go there – but apparently my magic has other ideas.)

This is what I’m talking about!  What if the things we’ve been calling disabilities, disorders, disease, impairments, illness, etc. etc. etc. are none of these, but are instead, our magic

  1. wanting to be known and
  2. letting us know what keeps our magic safe and what puts it at risk.

Remember: they once burned witches!

While this is (currently) illegal in this country, believe me, our culture finds other ways to punish and do harm to women who demonstrate certain kinds of power. While they might not be able to burn us, their actions might make us feel as if they are!

Bearing this in mind, it might be helpful to take another look at our magic and the threats to its safety.

  • Where have your gifts been questioned/challenged?
  • Where have you been punished/demonized/pathologized for your gifts (sensitivities, intuitive sensations, inner knowings, visions, prophecies, etc.)?
  • Where have you been told you’re crazy for knowing/sensing certain things?
  • When have you walked into a room and had the immediate sensation you should run?
  • Where have people clung to you and drawn energy and power from you, making you feel drained?
  • What environments or people feel draining?
  • What feels like pressure to you (expectations, the wagging finger of “should”)?
  • When have you been told you’re being judgmental when you share your bad feelings about a person you hardly know?
  • When have you been called a bitch for setting boundaries?
  • Where have others tried to damage your reputation or harbored jealousy over you?

All of the above are examples of how our magic is being threatened, along with an invitation to be more mindful of what our magic needs to feel safe and sacred. There is no one who can care for our magic but ourselves.  There is no one who can create the space and environment in which our magic can survive and thrive but ourselves.  Isn’t it time we do for ourselves what we so readily do for others?

Your magic is a sacred gift. Give yourself permission to treat it that way – no matter what society tells you otherwise!


What is Your Magic?

Each and every one of us has our own unique magic. Soul Gifts provides an opportunity to explore the depths of what your gifts might be so that you can claim them, while freeing yourself from the burden of trying to carry gifts that are not yours.