Triggers galore in the medical system

[Ecdysis]

I'm having to deal with the medical system right now, because of an acute pain issue (impinged nerve) and beyond the usual trigger-fest involved in seeking medical help, it's being made so much worse because it's just before Christmas and waiting times and lack of appointments are even crazier than usual.

It's really bringing to the forefront to me, how much standard "crap" that goes on in medical settings is so reminiscent of childhood trauma for me. Things like:

- simply not being listened to
- being dismissed
- being treated rudely for no reason (other than the medical staff being stressed)
- being treated like an idiot
- being invalidated
- being told that it "can't be that bad"
- being told that it's in my head/ I'm making it up
- being left waiting indefinitely/ for weeks/ months
- being made to feel like a whiny asshole for saying I need treatment for acute pain
- being given the run around
- being given referrals/ medical notes/ prescriptions full of errors cos they've been filled out with a lack of interest or care
- being made to feel like I'm wasting their time/ money/ resources
- being made to feel like a 2nd or 3rd class person/ patient because I have PTSD alongside physical illnesses
- being ignored
- being talked down to/ talked to like a child
- being treated in a hostile manner when I question a diagnosis/ treatment plan because I'm well enough informed to realise it's not a fitting diagnosis/ good choice of treatment, and then being silenced/ shut down for daring to stand up for myself and requesting proper treatment

THANKFULLY it's not all like this...!
There are enough Dr's and medical staff that do make an effort.
But there is soooooooooooo much of this stuff!
And I know it doesn't just happen to me... It's not that I'm somehow presenting as a shitty patient and therefore getting bad responses.
Tho I have gotten to the point of having meltdowns over the above kind of treatment when I'm in a medical situation that's urgent and the situation is just yielding the above listed bullsh*t.

It's so weird.

I saw a GP this week, 3 orthopaedic surgeons, 2 physiotherapists, 1 Dr for chronic pain management - desperately trying to get some kind of treatment sorted out before everything shuts down for the holidays because I do NOT want to be stuck with unbearable pain in the ER over Christmas.... : /

What's been quite eye-opening and interesting has been how BIZARRELY differently the Dr's/ medical staff's reactions have been...

One Dr is sure it's a herniated disc, won't listen to any contrary evidence, set out a treatment plan which requires injections at the nerve root via CT imaging, and which first requires an MRI, which he first refused to order and then refused to order the correct MRI for

The other Dr is certain it's not a herniated disc, thinks it's a rib impinging on a nerve, refuses to order any treatment or MRI at all, beyond giving Ibuprofen and physical therapy

The other Dr was too busy to see me at all, but was willing to order the correct MRI and prescribed Tramadol for the pain

The other Dr was too busy to see me too, but prescribed Cortisone, because the impinged nerve had become inflamed, which was causing the insane levels of pain. Thankfully the cortisone has taken it down from level 9 pain to level 7.

The medical staff have been a wild mix ranging from empathetic and helpful, to standard-netural-run-of-the-mill response, to rude, dismissive, annoyed...

And I've presented with the same condition/ symptoms and the same demeanour in each case... obviously distressed because I was in level 9 pain, with almost no treatment options over the Christmas break.

Having this bizarre full range of the spectrum responses all in one week has been... kind of eye-opening...? Not sure what to make of it tho... I've never been in a situation like this before of such intense pain combined with upcoming Christmas break, so usually, when I'm given the run-around and ignored and dismissed, it's this slow-motion crawl of trying to find adequate medical help... somewhere... with me getting increasingly distressed, triggered and panicky that all the childhood trauma stuff of not being heard, being ignored, not being helped, etc is repeating itself...

Like many PTSD survivors, I often avoid the medical system as much as possible anyway, because it's just such a huge source of triggers, and asking for help is a big trigger in itself... So by the time I do go and ask for help, I'm usually at a point of literally-cannot-bear-it-any-longer and truly need help... I don't know if that's part of the problem? That I wait too long before seeking help because I assume I won't get any anyway? But my PTSD brain doesn't get the logic that if I'm being dismissed with level 9 pain... What would be the point of coming in sooner, with say level 5 pain and asking for help?

I dunno... I need to process this... It's been a bizarre experience this week tho... Such wildly different reactions... And it feels like total luck of the draw of what happens, depending on where you go...

Oh and I should say that orthopaedic Dr's are my absolute WORST medical experience of all time... I'd rather go to a dentist, ob-gyn, urologist, have a colonoscopy, just about *whatever* than having to go see an orthopaedic Dr because of a painful back/ arm/ leg/ whatever... I find them so beyond uncaring and unempathetic... I dunno what it is about that particular field of medicine... They're so mechanistic... Anything they can't "see" in an MRT isn't real anyway... And if their recommended treatment doesn't work, then it's the patient's fault... And if the patients are in major pain, then they're probably just addicts trying to get a pain med prescription... Just a horrible approach to patients and pain all round...

 

[Movingforward10]

What an awful week you have had. Incredibly difficult. Are they communicating with each other to coordinate your care?

 

[Ecdysis]

Are they communicating with each other to coordinate your care?

Oh gosh no... They'd be horrified to hear that I found their care/ treatment inadequate and was seeking to fill in those gaps elsewhere...

They think they're gods in white and know best... And that for a patient to indicate their care/ treatment is inadequate would infuriate them...

I wonder if part of the problem is that 99.9% of orthopaedic surgeons are men... The level of mansplaining and arrogance and apparently knowing better what's going on with the patient than the patient could possibly know... Ugh....

I think they're like the car mechanics of the medical world... Just view everything as mechanical parts and to them people and their feelings and their experiences of their own medical conditions are beyond irrelevant to them...

 

[shimmerz]

You don't happen to be Canadian, are you? Sounds like every Canadian hospital experience I have ever had. I feel for you.....

 

[whiteraven]

Oh, I could have written this! I have not had a positive experience with doctors in...years. Wait, have I ever? LOL I mean, there's a reason medicine is called a "practice"--they think they know everything, but almost everything is theory and subject to interpretation. Unless you have a very concrete, your-neighbor-could-diagnose-you thing, you're really taking a huge risk with the medical community.

And if you are dealing with pain? Forget it.

I'm so sorry you are having to deal with this.

 

[whiteraven]

I think they're like the car mechanics of the medical world... Just view everything as mechanical parts and to them people and their feelings and their experiences of their own medical conditions are beyond irrelevant to them...

I started referring to them as "body mechanics." They are no more, and they often suck at that.

 

[Ecdysis]

Got up at 5 am today to drive an hour to the pre-Christmas MRI scan that I managed to organise by some miracle. The staff there were very nice, I got my images on a CD-ROM thingee straight away and the radiologist will send the report to my GP today, as the orthopaedic Dr is already off for the Xmas break.

My pain levels are down to a 3 for most of the day now, with occasional spikes around 5 or 6 which last an hour or two. Which is definitely managable. I'm no longer in a level of pain that's sending my brain into automatic fight/flight survival mode, so that's a relief.

It's been so interesting talking to different people about this medical-system-issue this week, because it's been so bizarre and hyper-visible... When it's just the "normal" day-to-day medical incompetancies and rudeness, I think I and many others tend to just suck it up, cos we're used to it unfortunately and know there's no point in complaining - if you do, it usually just means you get treated even worse, cos now you're a "difficult patient who COMPLAINS"...

But yeah... talking to lots of people about it this week... And haha, I dunno whether I find it a) to be a relief that others go through the same or even worse bullsh*t in the medical system (and it's pretty common place, not some rare outlier) or b) whether hearing all the awful and unbelievable medical-system-failure stories others are telling me about... whether that's just making me more fearful that the medical system is even more incompetent and failing than I even realised... and how whether you get help or not is just the luck of the draw and if you can, you should avoid getting critically ill or life-threateningly ill, because your chances at fending for yourself in a broken medical system when you're in a state of needing very urgent care... are well, not so great...

It reminds me of this documentary, where a journalist went undercover as an ambulance phone operator and filmed how unbelievably bad the situation is in the NHS. Absolutely shocking. People just left to die... And the protocols are sooooo horrible... People are left waiting 5 hours for an ambulance... And instead of just telling someone who's calling cos their husband is having a heart attack "Umm, the ambulance will probably be around 5 hours, you're better off getting your husband in your car, a taxi or an Uber and getting to an Emergency Department as fast as you possibly can..."

Well, they're not allowed to say that... So they are legally required to say "An ambulance will be on its way as soon as it possibly can" - even if they KNOW it's gonna take 5 hours... The journalist was crying about the cases where she had to do that...

Just unbelievable...

 

[Ecdysis]

Adding these 2 documentaries too...

That's the reality of it, isn't it?

I think what makes it so difficult for me with PTSD from childhood trauma and neglect, is that the abysmal standards of medical care, especially in Emergency Departments... it feels so reminiscent of my childhood... The message is: you don't matter, your needs don't matter, you have no rights, you're at the mercy of people to whom you're an irrelevant number not a real person... It feels like I'm straight back in my childhood... And then my PTSD brain doesn't know what to do... It feels like a nightmare to be stuck back in those childhood conditions... And I feel paralysed and get into fight/flight/freeze... and panic... It's so disempowering and dehumanising...

 

[Movingforward10]

The message is: you don't matter, your needs don't matter, you have no rights, you're at the mercy of people to whom you're an irrelevant number not a real person... It feels like I'm straight back in my childhood... And then my PTSD brain doesn't know what to do...

I hear you. I, luckily, haven't had any ongoing medical needs but this perimenopause is giving me some. And I am immediately backing away when I am feeling like I don't matter, they don't care, that you're just an annoyance and the 'computer says no' response. But my medical issue is manageable and I'm not in chronic pain like you are so being met with that, and being in pain, is so so much to deal with.

It's also the problem of the medical model sitting outside of social models. It just doesn't work.
And I don't get why the medical professionals don't get that.

We're body parts. Felt that when I had an ultra sound on my kidney and bladder. I was just a torso. Rather than a person nervous about showing a part of my body.

 

[Ecdysis]

I am immediately backing away when I am feeling like I don't matter, they don't care, that you're just an annoyance and the 'computer says no' response.

Yeah... That's always been my go-to reaction too... It's not good tho... It just leaves medical issues that you have untreated and turning chronic and getting worse... Which is both worse for the individual and then also makes later treatment, when it becomes unavoidable, more complicated too... Ugh...

I'm finding finally putting it into words... Seeing it clearly, as an ingrained pattern... And not just something that happens sometimes, for "inexplicable" reasons or feeling like I've done something "wrong" as a patient for yielding such a terrible response... I'm finding it deeply helpful to finally call it what it is... It's systemic failure...

I'm also finding that, like this week, I'm going to simply have to find ways to push back at it... Like going to see 4 doctors and 2 physios in one week... If that's what it takes to get an adequate response in an urgent situation... Well, maybe that's just how it goes these days... Maybe I have to stop taking any of it "personally" (you know, feeling hurt, feeling upset, feeling ignored, feeling shamed, feeling dismissed...) and just decide that if the medical system is going to treat me like a number, then I'm going to treat it like a number too and just keep pulling levers and pressing buttons until some halfway adequate care results... And not do it in an upset/ distressed way... But just do it calmly and coldly and politely, because you know from square one that the care is going be inadequate and shitty and minimal... And if you want any more than that, you're going to have to be persistent and just view it as a marathon, not a sprint and accept that the care that should take one or at most two medical appointments, may take half a dozen or a dozen attempts instead... And just not get frustrated at that... And make sure to seek treatment way, way earlier... Not leaving it until things are unbearable cos you think you'll only get shitty help anyway, so no point in going in any sooner... But rather planning that because it will take weeks and weeks to get adequate care, you'd better start early and make sure you've got a few weeks up your sleeve before it gets to an urgent level of medical need...

Edit to add: I was thinking yesterday too, that this horrible type of medical "care" doesn't just remind me of childhood abuse and neglect... but it feels like an abusive (romantic) relationship too... Like you're stuck with a partner who belittles you and insults you and tramples all over your needs and treats you like dirt... And you're stuck in a loop of putting up with dehumanising behaviour because you can't figure out how to leave and keep wondering whether it's cos you've done something wrong to deserve such treatment... Ugh...

It's also the problem of the medical model sitting outside of social models. It just doesn't work.
And I don't get why the medical professionals don't get that.

This sounds like an interesting thought, but I'm not sure what you mean?

 

[Movingforward10]

I'm going to treat it like a number too and just keep pulling levers and pressing buttons until some halfway adequate care results... And not do it in an upset/ distressed way... But just do it calmly and coldly and politely, because you know from square one that the care is going be inadequate and shitty and minimal..

That sounds a really good idea. Though I imagine that will take a lot of energy and finding space to hold all the emotions will be a lot.
I hope it works for you as it sounds so difficult.
I wish it were different. And that one of those doctors picked it up properly.

This sounds like an interesting thought, but I'm not sure what you mean?

What I mean is that they isolate the medical issue from the person and the social situation. For example, they see the body part. Or they see the medical issue that they are trained in. But they ignore everything else. Take female reproductive/sexual health. 1 in 4 women have experienced sexual harm. But do those medical services cater for 25% of their patients? Nope. They don't even think about trauma informed care. We are left to work all this out ourselves. The social model would incorporate the fact that 25% of patients have had sexual trauma and that the medical space would need to cater for that in terms of leaflets, information, service delivery, patient care etc etc etc.but instead: absolutely zero. Because you are just a cervix or uterous or fallopian tube, or whatever body part that is the focus for that medical person.

 

[ninja]

But my PTSD brain doesn't get the logic that if I'm being dismissed with level 9 pain...

Yeah, so I have found that it is generally most effective for me to go in when I am in enough distress that I’m relatively confident I need medical intervention but not so much that I’m feeling the desperate need for help. Obviously, that sometimes can’t happen because shit happens. However, I’ve noticed that I tend to get better responses when I can talk in their lingo, demonstrate that I’m not [insert whatever stereotype they have of me given what I look like and how I’m presenting], which is easier to do when I’m not in massive pain/distress. Should we have to do or think about stuff like this? Nope. But yanno..

In particular, I think pain when it’s not life-threatening is handled quite poorly.

Then there’s the burnout many ER personnel feel from being in that environment, but also, depending on where you are, dealing with all the drug-related medical emergencies that never end. Not a justification at all, just building towards exactly what you point out below.

It's systemic failure...

It’s 100% a system failure, imo. Everyone I speak to, including the hundreds of research participants I’ve interviewed about their experiences accessing medical care, says the same things. Hard to access, difficult to navigate, dismissed, belittled, care decisions made unilaterally, made to feel like a number, the list goes on.

Personally, I think part of the issue is that when doctors don’t take the time to listen and get to know someone (or they work in a system that doesn’t allow for this), they don’t have the opportunity to get their assumptions, stereotypes, and preconceived notions proved wrong. We all have them, as a professional working with people, you’ve got to own them. That needs to be part of the job.

I’m really sorry you’ve had these experiences. I hope your pain stays under control and you get what you need from the imaging!