When people are hurting, what they really need is someone who is fully there for them – not someone who is condescending or officious. The only way for you to be there for them is by facing your fear or anger, whatever feelings cause you to shut down.Pema Chodron
I reached out to an expert last year. Or, more correctly, I was referred to one.
Part of me was hesitant. I’ve been down this expensive road before (many times, in fact), and it’s never gotten me far.
But I’ve been suffering some new and worrying symptoms, so part of me chose to trust the recommendation (from a doctor I respected), and off I went to book in with the recommended medical specialist. I couldn’t even get in to see them for months. It was only a sudden unusual test result that allowed me to get through the door faster. I’d become an urgent oddity.
For the past few months I’ve been prodded and poked. So many tests. So much old ground covered again, plus a few new things and some wild new theories.
I’ve had my medical history (it’s long and complex) painstakingly laid out, examined, and, eventually, dare I say it, trashed.
Because, among other things, I have late-stage Lyme disease. And Lyme does not exist in Australia.
Even though I have some horrifying new brain scans, genetic tests showing abnormalities and giving me a confirmed new diagnosis, abnormal bloodwork, a long-standing auto-immune disease, and heart ultrasounds showing clear evidence of progression of my chronic degenerative illness (neurological and cardiac-involved Lyme) apparently most of all of this is in my head (imagination, not brain tissue). I am a difficult patient, and obviously many of my symptoms must be psychological because they don’t fit any of the other boxes that the current expert is trying to fit me into.
So much of what I am experiencing is textbook late-stage Lyme. The rest? Well, that was what I wanted diagnostic help with. But in Australia, as soon as you mention Lyme, or Lyme-like illness, my symptoms are just me having a bad attitude and a mental illness.
My new specialist recommended a psychiatrist.
I chose to question the specialist on their theory that this is all in my head, and told them I would seek a second opinion.
For this I was ridiculed, belittled, and then abused.
I’m so angry I can’t even talk about it.
And I’m weary, so weary of over 30 years of not being taken seriously.
Bloody over it, actually.
But I’ll pull myself together, and then with people I trust and who believe in me, and with some help from physicians in countries where Lyme is actually a valid diagnosis, I’ll work though it all.
Please don’t worry about me. It’s all pretty much situation normal. I’m mostly fine, and in fact in many ways I’m great. Life goes on. All this background health stuff is the same as it was a year ago, five years ago, ten years ago, thirty years ago. I’ve got this. I would have just liked a little more help. Oh well…
Much love, a cranky and soul-weary Lyme Warrior xx