That’s the Red Sea in the featured image. When I was in my 20’s I couldn’t have possibly imagined ever being able to snorkel off the coast of Egypt. But at 47 I did.
In 1993, at 22 I nearly died in the sea. Off the coast of Noosa, on the Sunshine Coast. My scuba dive operator (I was a Dive Master trainee) was so obsessed with completely the dives for a course that he did not think safety was much of a concern.
The result was two students who kept floating away and me chasing them. I got the bends; a nasty combination of neurological and musculoskeletal forms. Before I go any further…no, I didn’t “come up too fast” – it’s much more complicated than that and can take hours to experience symptoms. That’s Hollywood bullshit.
Ever since my life has been plagued by all sorts of health issues related to being in a hyperbaric chamber after a delay of 28 hours before I could get treatment.
One of the issues is uncontrollable blood pressure (BP). No matter what I do. I could sell my soul, strike a deal with the druids, have an exorcism or launder money for the mafia to pay for a black market heart transplant and none would work.
For years I thought that my BP was related to the neurological trauma of the accident and subsequent treatment. A couple of doctors with some specialist training agreed, but invariably most doctors (both male and female) didn’t pay any attention to my concerns.
In the last ten years I have had it confirmed via two specialist doctors and a lot of testing. There is nothing wrong with my heart – my brain (in the driver’s seat of controlling my blood pressure) has rejected the notion that I need reasonable blood pressure to survive. *Damn you, brain*
It’s extremely frustrating to be told by the medical profession that you do not know your own body. Try that for over 25 years, only to finally have your viewpoint validated in 2013 and 2018.
I’ve done everything to keep my BP at bay. Most recently I had a virus for a few weeks and my medication for hypertension did not absorb, resulting in a hospitalisation.
When I go to hospital I am a bit of curiosity for doctors, but until recently that hasn’t been necessarily positive. Most of them won’t get to meet a survivor of Neurological Decompression Illness (NDCI) in their careers.
This recent hospitalisation this past week was the nicest hospital visit (albeit under awful circumstances) since like…forever.
I’m used to blank stares from nurses and doctors when I mention the NDCI, blood pressure and my constant battles with chest pain. But this visit this did not happen. In fact there was a great deal of knowledge about it and I was treated with respect – not suspicion or condescending disbelief.
The Huffington Post has recently brought up the phenomena of gender bias towards women as patients. I found the article of interest about gender bias in the treatment of pain whilst sitting in a hospital bed. I was going through what I go through every few years with the medical profession around the “mystery” of my blood pressure and associated chest pain. It’s not a mystery to me, but hey…what would I know?
Laurie Edwards, in the 2013 NY Times article “The Gender Gap in Pain” writes:
The oft-cited study “The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain” found that women were less likely to receive aggressive treatment when diagnosed, and were more likely to have their pain characterized as “emotional,” “psychogenic” and therefore “not real.”
If you want to see the original study referred to above you can find it linked at the bottom of this post.
I know at times I have been referred for mental health services for describing the pain I experience as a post-bends patient, rather than take me seriously. I even had one doctor refuse to take seriously dangerous blood pressure because he thought it was “emotional”.
Yet prior to getting the right medication mix, I could meditate and be totally chilled and still have massive blood pressure. When properly medicated it comes down to normal.
I am reminded of the time in 2009 when I meditated in the emergency room to prove to the young male doctor there that I was not merely “stressed out and emotional unnecessarily”. I managed to drop my heart rate down so low he said he was “impressed” and yet my blood pressure stayed dangerously high.
He concluded that, at 39 years old and after years of arguing since I was 22 that I had no control over my BP, “that you clearly need medication”.
No shit Sherlock.
I did everything before the medical profession would take me seriously. At one point I rode a bike 300km a week, went to the gym three times a week, meditated twice a day, ate perfectly and lived only for my job and my young child. I don’t drink or smoke, so that wasn’t a problem. I didn’t have a life though. And I still had fucking enormous blood pressure that resulted in chest pain and feelings of general malaise. All of which I pushed through like the pain in the ass trooper that I am.
Since then I have just stood my ground, changed medications when side effects became a problem and changed doctors when they told me to try diet, exercise and other treatments for heart related hypertension.
I don’t have heart related hypertension – my heart is a fucking legend. It has allowed me to trek 211km in the Himalayas at altitudes of 4600m no problem. My heart has put up with average BP of 160/111 – 180/120 for extended periods of time because no doctor would properly medicate me.
This week my cardiac stress test result garnered the words “heart like a Mallee bull” from one of the doctors. Because my heart could handle blood pressure of 240/140 during the stress test. Gee…thanks. Now let’s fix it so my heart and organs aren’t under so much pressure, eh? Yep, goodo.
Yet in the past, I was often treated as though myself and my blood pressure machine was “all in my head”. Interesting considering stress does not affect my shitty blood pressure. It’s just shitty and between 150/110 and 190/120 on a daily basis.
This week a fabulous team at Alice Springs Hospital took all my concerns seriously. I didn’t have to argue. Wow. That was different.
One really cool young guy doctor knew a lot NDCI and reassured me that it was most likely that it had caused my struggles with BP and that it should be treated accordingly.
I was in hospital this week because it appears my medication hasn’t been doing what it should for the last 18 months or so. I got a virus and for the last few weeks my medication wasn’t absorbing and I had bad chest pain and BP of 200/130. I was admitted to hospital to sort it out. It was scary.
But the result was that I finally have doctors permission to adjust my own medication dosage, with specific parameters, around my daily blood pressure readings. Just like a diabetic does with blood sugar readings.
*HOO-FUCKING-RAY.* there is a little happy dance that goes with this…but I can’t replicate it in writing…
There is finally medical acknowledgement of what I have been saying all along. I never had blood pressure until I suffered NDCI and now it is uncontrollable – no matter how much of a “good girl” I am.
It does get worse when I am around abusive shouty people and things that generally put up people’s blood pressure, that is for sure. Regardless of medication. But now I can bring it back down with the right combination of medication – and removing myself from toxic situations.
It’s taken a while but we got there.
I need to point out I am always calm when I present to hospital with massive blood pressure and chest pain, despite how distressing it is. Why? Because from 2006 and 2009 they keep referring me as a mental health patient for being upset about chest pain – chest pain that I legitimately had because I had been getting around with massive blood pressure.
In case you didn’t know, carrying around really high blood pressure is shit. I’m tired for no reason. My ears ring much louder than normal. I see a swarm of black dots. Overy the years some doctors say that is typical with high blood pressure, some have said it’s anecdotal.
But, by fuck, none of those things happen when my BP is normal. I know have so much evidence from the medical establishment that it is not “in my head” that it’s almost insane in itself. But still I still have to explain that over and over again.
So now I work really hard not to feel or act emotional about my blood pressure when I present to a doctor, despite how crap I might feel. I tend to get better response from both male and female doctors. But the downside is that they then think I am exaggerating; until they get the blood pressure machine on me and watch me over time.
Damned if you do, damned if you don’t.
So I suppose the moral of the of story is this: if you are female and experiencing pain, expect to be treated differently by the medical profession. Be prepared for it and don’t tolerate it.
Even better, if you find yourself having to explain the pain over and over again and it falling on deaf ears – don’t take it. Print out the study The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain and shove it under their noses and asked to be taken seriously. Then ask to see someone else and make a formal complaint.
Because a good doctor/s – like the team I had this week, they’ll listen and not treat you like a “malingerer”.
Don’t give up and don’t let any condescending medically trained poop treat you like a “hysterical woman”. You are entitled to express that you are in pain in whatever way you need to (with the exception of abusive behaviour – that is never okay). You are entitled to ask for help and to be treated with care and concern, not condescension.
Jacci Pillar 