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
14 thoughts on “I’m Still Too Angry To Talk About It”
Aloha Nicole…we do not have Lyme disease here in Hawai’i, however we have specialists that can treat a person who contracted the disease elsewhere…OR…call specialists who can assist in treatment…so sorry to hear of your struggles with these un-enlightened physicians…
Thank you so much Leialoha xx
After following your blog for a couple of years, I finally looked up why Lyme disease isn’t officially recognized in Australia. I think it’s silly to assume Aussie ticks can’t possibly carry the Lyme-causing bacteria, especially since experts have found the Borrelia in them. I’m sorry you have to go through that. I live in the U.S. where Lyme disease is considered real. Plus Johns Hopkins University Medical System is only 15 minutes away, giving us access to experts galore. We’re spoiled here. Still it can take a lot to get a diagnosis — 9 doctors to get to my husband’s cancer diagnosis with the same process of rehashing medical history, test after test after test. Honestly, I think universally, the biggest problem is arrogance in medical community.
Dear Nicole, our doctors and health specialists all over the “developed countries” are trained to not question themselves but their patients, to have the last word (as if that counted), to be in control and be the master. Whereas curing people has to do with listening and forgetting one’s ego in order to really listen. They are just putting themselves and their academic knowledge in the center of it all. I am sorry you have to go through all this. The kind of doctors we have is the reflection of our society: egocentric, not caring etc. But there are always the exceptions and I send you light to find them and only them. I just thought of something: Have you spoken to vets? I am not kidding, my sister got healthy when the doctors were at a loss after my parents talked to a vet and he had the idea. Maybe is lyme for animals not such a taboo as it is for humans? Much love from Berlin!
Ooohh Nicole❤️❤️ Such a familiar story. There’s never ever a place (especially with a Medical Professional) for ridicule or abuse… belittling or ignoring.
I recall one fines sunny afternoon… years back now. I’d been directed/referred to this Medical ‘Specialist’. A Neurologist. I remember resembling a pig. His arrogance was overwhelming… intent on intimidating.
He lent over his desk… moving into my space. His face puffed and red, and espoused… ‘Polio has nothing to do with the nerves. It’s purely a muscular disease’.
I mean what could I say… I was speechless.
(The Polio virus destroys nerve endings).
Oh Nicole… sending lotsa laughter… at these strange creatures we encounter. Much love to you💖💖
I’m confused. How is this disease not acknowledged in Australia, when it is in so many other countries? I can’t imagine how infuriating this is. This will all eventually backfire on these doctors spectacularly. How is it that they can’t explain your medical history, but want shoot down and not acknowledge Lyme disease?! I can’t wait until the tables are turned and you can give those doctors the same “treatment” they showed you.
There are some assholes who are suppose to be professionals
Thankfully you know not to give your power or belief system away to such ignorant, uncaring and uneducated ‘professionals’. It is a cop out to put it back onto the patient as a psychological issue and one that is actually taught in medical school. My friend (Now Dr) said they were taught to never say they don’t know, but instead ask if it could it be psychological. 🤦
I know you will dust yourself off and find the right team to help. Sending love dear warrior ❤️
This makes me angry beyond words. It sickens my stomach. Lyme exists on all continents of the world with the exception of Antarctica. This denial of late stage chronic Lyme is beyond. One day the history books will show his f wrong these arrogant drs were. 🤬🤬🤬🤬
I send you energetic, loving, healing support! I truly believe there are sooooo many in the medical community that if they did not learn it in a book, it does not exist =( So sad they do not understand there is so much more to our bodies than what exist in a book!!!!!!!!!
I truly hope you find the help and support you so rightly deserve <3
You just want to punch them in the face don’t you!? Or curse them with the same affliction so they can see what it feels like!! Maybe that’s just me though… I’m sorry you met yet another tosser on this journey. Boooooo to them.
Hey Nicole… sending you love and healing angel kisses…xxx
I am sorry to hear this Nicole. My uncle had Lymes disease. He unfortunately would not stop working when he got sick. He worked a physical job 16hrs per day and would not slow down (old school that you must keep working, ignore your body, it’ll be right mate attitude). Long story short, his Drs finally diagnosed him with Lymes disease (it took years) and he was very sick by then. His family took him to a Clinic in Germany as a last resort but he was so sick we were scared he may not make the plane trip. He felt better whilst at the clinic but when he came home again treatment was not available here. He unfortunately passed way. He lived in the Lismore/Byron area so his Doctors are determined to prove to the government that Lymes disease is in Australia and his medical records are in Canberra as part of this. I truly hope he did not die in vain and that the Government realise it is very much a disease in Australia and start to provide adequately treat our patients instead of being ignorant. Sending you so much love Nicole!
It’s painful you haven’t and aren’t getting the help you deserve. There are too many medical “experts” like this that greatly contribute to diminishing people’s lives. You have every right to be angry and over it, but you already knew that. Love to you.