Words I Can't Come Up With and Words I Wish I Hadn't Learned

Gaslighting.  According to Healthline.com, the definition of gaslighting is "a form of emotional abuse that makes you question your own beliefs and perception of reality.  Over time, this type of manipulation can wear down your self-esteem and self-confidence."  

I had never heard this term until a few months ago.  Unfortunately, now, I'm quite familiar with the term.  

When I tested positive for Covid, that made sense to people.  Everyone understood.  However, when three, then four, then five weeks went by and I continued to not feel well, or would feel well for a couple of days and then feel worse again, no one seemed to understand.  I was given advice like, "Drink a Gatorade right when you wake up," or "Once you get your booster you'll feel fine," or "That horse dewormer really does cure long Covid symptoms" or "You just need to push through it because you're just deconditioned from being sick."  I went to the doctor week after week, showing them my swollen legs, ankles, and feet, told them about my racing heart, my shortness of breath, the shooting pains down my legs, my increased carpal tunnel type pain in my arms and hands, the constant headache, the extreme fatigue, the lack of energy, the joint pain, the brain fog, the dizziness.  

They did labs that showed inflammation.  Yes, we know I have inflammation.  My thyroid was out of whack.  Well, yes, that makes sense that my thyroid meds might need adjusted after being ill so no big surprise there.   Other things were a little off, but not enough to show anything definitive, just that "something" could be going on.  But nothing really provided answers.  I did my own research.  I requested a Long Covid specialist at UNMC, which I was referred to and saw within a couple of weeks.  

Finally, validation.  Nothing I told him was a surprise.  Nothing was weird to him.  Nothing seemed odd or unheard of because he'd heard these same symptoms over and over from countless other Long Covid patients before me.  He sent me to Madonna's Long Covid Clinic and the validation continued.  They understood my pain, my frustrations, my symptoms, and I never got that look of confusion or felt like they were just humoring me.  

But all good things come to an end.  And I am no longer attending therapy at Madonna.  However, my symptoms continue to impact my life every single day, and I feel like, in many ways, I'm back to square one again.

After appointments I will notice that my visit notes say I do not have chest pain or palpitations, no shortness of breath, that there are no abnormalities in my gait, or that body systems were "normal" that weren't even examined during the visit.  I have gotten comments, almost mocking, scolded, for monitoring my vitals to closely, something my therapists at Madonna taught me to do in order to plan and pace and prevent post-exertional malaise.  When I try to explain things I'm experiencing, that I cannot remember words, that what I mean and what comes out don't always match, that I struggle to talk on the phone, that being in a room with a lot of people or activity wears me out, I receive comments or suggestions that leave me feeling judged, misunderstood...gaslighted.