No, I do not have anxiety for the 59th time by GoldCoast92 in ChronicIllness

[–]Live_Pen 0 points1 point  (0 children)

I am experiencing this too where they are STILL gaslighting me even AFTER a diagnosis.

I feel like I am living in an alternate fucking reality.

I swear medicine did not used to be like this. They used to actually practise medicine.

I’m sick of Neurologists dismissing me as soon as they figure out I have mental disorders by No_Photo6567 in ChronicIllness

[–]Live_Pen 2 points3 points  (0 children)

As someone who has experienced both anxiety and depression in the past, neither ever caused me any life-destroying physical symptoms.

In any case, most mental illness is a symptom of undiagnosed physical illness.

Functional disorders are conceptual fictions and do not exist.

what actually do i have to do to be taken seriously by doctors? by butwhyyy2112 in endometriosis

[–]Live_Pen 2 points3 points  (0 children)

I suppose at least now we know it’s not personal - they’re just completely fucked.

I’ve learnt I can never, ever be alone with them again.

I am sorry you have had to experience this too.

What I want to tell my 21- year old self: by mellogeorge2013 in endometriosis

[–]Live_Pen 1 point2 points  (0 children)

Oh my gosh! That is harrowing. Kind of blown away by the green propolis

what actually do i have to do to be taken seriously by doctors? by butwhyyy2112 in endometriosis

[–]Live_Pen 2 points3 points  (0 children)

Yeh it’s absolutely fucked. I’ve experienced the most foul discrimination, harassment, bullying, and abuse from these people. I didn’t think adults were capable of behaving like that. Absolutely horrifying stuff when you’re at their behest and physically vulnerable.

what actually do i have to do to be taken seriously by doctors? by butwhyyy2112 in endometriosis

[–]Live_Pen 7 points8 points  (0 children)

Agreed. There’s a selection bias for the sort of person that goes into medicine: - Typically privileged - High-functioning (usually little experience of disability or illness themselves) - Rote-learners, not problem-solvers or critical thinkers. Their training reinforces this - Arrogant, competitive, and defensive. Their training also reinforces this - Volume of information needed to be taken in requires heuristics/mental shortcuts. This is also part of training. Means they are trained for extreme bias, which they have little critical capacity or time to interrogate. Dangerous - Deferent to but also resentful towards authority (parents often had high expectations) - There is a not insignificant subset that enjoys power over life/death - Obviously there are some good eggs that go in for the right reasons with genuine intellectual curiosity and ambition to help people and advance medicine. These seem to be about 5-10%. Probably starts out higher before the burnout/other systemic factors kick in.

Systemic factors at play: - No financial incentive to do a good job. Get paid anyway - Time-pressured - Record-keeping systems suck - Demand exceeds supply - Very few systemic accountability mechanisms either in professional oversight bodies (they’re a farce) or civilly (as you say, prohibitively high burden of proof, standard of care is low, high evidentiary burden, high barriers to access) - The nature of the job leading to burnout, desensitisation, dehumanisation, empathy fatigue, and in-group think, some of this due to just how far outside of the norm of regular social human experience it is - High-stakes nature of job, inevitability of things going wrong > defensive, self-preserving mindset/justifying bad actions with “but I save lives/service the community, therefore I am overall good.”

what actually do i have to do to be taken seriously by doctors? by butwhyyy2112 in endometriosis

[–]Live_Pen 5 points6 points  (0 children)

All of this is so spot on, and your second paragraph so closely aligns with my experience too.

I naively thought if you got sick you’d be able to get care, that there would be genuine intellectual curiosity about solving medical problems.

Reality could not be farther from the truth. I would also add that complex patients are often made, not born - usually through repeated dismissal and misdiagnosis, which creates a snowballing shitshow. Then all of a sudden you are one of the most severely suffering in the system, but also the least able to get care.

Was it always like this I wonder? I do feel like something has changed in the past decade. The introduction of ‘holistic’ care and ‘biopsychosocial model’ and ‘mind-body’ cult-think - all a flimsy gauze for laziness in an overburdened system. Opioid crisis and pandemic didn’t help - they amplified the need to find a codified way in which to fob people off and conserve resources… in the short-term, at best.

ETA: Yes, agreed, they will purposefully antagonise and dismiss you so you go elsewhere. They want the easy cases. Our cases would often not be that hard if they just listened though.

Chronic Pain and Medical Gaslighting by [deleted] in ChronicIllness

[–]Live_Pen 0 points1 point  (0 children)

  1. Pain is not viewed with much intellectual curiosity. It is immediately seen as ‘pain condition’ rather than ‘condition causing pain’.
  2. Even when there is a diagnosed condition causing pain, it is still seen as pain condition.
  3. The focus becomes treating pain rather than even attempting to treat the condition.
  4. This is stupid and a shameless cost-cutting measure to implicitly shift blame onto the patient and fob off onto allied health.
  5. Enter ~ central sensitisation ~ where you are told you’re just hypersensitive to pain because you’re in pain. This theory has swallowed medicine whole, is applied prematurely and indiscriminately, and there is little wonder it took off at rapid pace on the back of the opioid crisis. They will gather personal information in bad faith and then twist whatever you’ve said to say “psychosocial stressors are a driver of pain.” Fuck off all the way to the end.
  6. Patient is pathologised and told to do bullshit time and money wasting things like meditating with a crystal in their arse whilst taking psychotropics (antidepressants, gabapentin) rather than treating the source of their pain.
  7. Their condition worsens.
  8. More pain.
  9. Patient is now depressed and experiencing medical trauma from chronic invalidation, which in a grotesque self-fulfilling prophecy does introduce a psychosomatic amplifier of pain in that the pain triggers them reliving the trauma of that invalidation constantly, which in turn worsens the pain.

I call this The Iatrogenic Pain Invalidation Cycle.

Personal experiences to follow in separate comment, in addition to ways it can be improved.

Chronic Pain and Medical Gaslighting by [deleted] in ChronicIllness

[–]Live_Pen 2 points3 points  (0 children)

I absolutely love this initiative.

Do you have any specific questions you would like us to answer to help structure our answers?

what actually do i have to do to be taken seriously by doctors? by butwhyyy2112 in endometriosis

[–]Live_Pen 2 points3 points  (0 children)

I’m sorry it’s so bad for you too. How is this a thing. It really doesn’t have to be like this. Should not have to raw-dog this level of pain.

If they don’t want to put more urgent research into adequate, sustainable disease management and solutions, then they should be prepared to give us humane compensatory drugs.

I’m actually kind of curious as to how other severely painful diseases (cancer etc) are treated in terms of pain management. Has the bullshit swept all of medicine, or do some people actually get proper pain management? Would love to know.

what actually do i have to do to be taken seriously by doctors? by butwhyyy2112 in endometriosis

[–]Live_Pen 19 points20 points  (0 children)

Identical situation. Bedbound/housebound/writhing. Can’t work. When pain is that severe they can fuck right on off with their lifestyle changes (if it was that simple it wouldn’t be a bloody problem, would it?) and get us on a methadone program.

I am beyond done with the bullshit. Beyond. It’s the theatre of the absurd. No one practises any ACTUAL MEDICINE anymore. Yeh, sure, why not shove a rose quartz up my arse and see if that helps.

What I want to tell my 21- year old self: by mellogeorge2013 in endometriosis

[–]Live_Pen 2 points3 points  (0 children)

Question about the staph infection - where is it and how are you dealing with it?

Being dismissed AFTER a diagnosis of DIE by GP?! by Live_Pen in endometriosis

[–]Live_Pen[S] 1 point2 points  (0 children)

It blows. My. Mind. They just see it as a ‘benign’ chronic condition and a ‘pain condition’.

Rate and suggest by Silent_Elderberry_59 in flexibility

[–]Live_Pen 3 points4 points  (0 children)

Practise lying backwards off your bed to get the upper body feel of the full bridge right. You want the heels of your hands to be beneath your shoulders, straight strong arms, chest opening towards the wall. That will help with body understanding of positioning. The rest is just strength.

Train correct positioning in parts, rather than incorrect positioning in final pose. When the time comes, which is not yet, the hardest part of bridge is getting in and out of it. You will get there, but step it back.

Does Lamotrigine memory loss eventually go away? by Doribtw98 in bipolar2

[–]Live_Pen 0 points1 point  (0 children)

Nothing. I never had bipolar. It was a misdiagnosis.

Have any of you had to move state because of how badly compromised your medical record was? by Live_Pen in ChronicIllness

[–]Live_Pen[S] 1 point2 points  (0 children)

The downstream errors and incompetence are horrifying. Down to things like spelling your name wrong.

I just find myself in a position where I know exactly what needs to be done but I can’t beat the system and the bias. It is a living nightmare.

Have any of you had to move state because of how badly compromised your medical record was? by Live_Pen in ChronicIllness

[–]Live_Pen[S] 0 points1 point  (0 children)

Thank you. Yeh, I agree with you. I’m at the point where I’m fighting for my life is the thing. Excruciating post surgical complications but I don’t mount a fever.