Sie lebt mit chronischen Schmerzen, die nicht diagnostiziert wurden. Ihre Geschichte ist Teil eines jahrzehntelangen Verfalls der Gesundheit der Kanadier
https://www.thestar.com/news/canada/she-lives-with-chronic-pain-that-went-undiagnosed-her-story-is-part-of-a-decade-long-decline-in-canadians-health/article_dbad0d0d-b44c-44d9-8270-34d3b5845b10.html
26 Kommentare
I’m not trying to stir controversy, but this is exactly the kind of situation that raises difficult questions about MAID in Canada.
When someone is living with relentless, life-altering pain that medicine genuinely can’t relieve, we have to ask what compassion actually looks like. Is it always extending life at any cost, or is it respecting someone’s autonomy when their quality of life has been fundamentally eroded? How many anecdotes show up on this very sub whenever MAID is mentioned, talking about how grateful people are to have MAID available to help ease their loved one’s suffering? There are a lot of people whose lives, and the lives of their loved ones, were made better by MAID, and that is undeniable. Which makes MAID an undeniably good thing, and a necessary government service.
At the same time, there’s an uncomfortable reality we can’t ignore: healthcare resources aren’t infinite. Every system has limits, and difficult choices are already being made every day, just not always openly. Triage exists because it has to. When resources are stretched, they’re directed where they can have the greatest impact.
That doesn’t mean people suffering from chronic conditions are less valuable. But it does mean we need an honest conversation about how to balance compassion, autonomy, and sustainability in a system under strain. Throwing more money at the problem may not be the best solution, as our government (and subsequent governments) will keep increasing debt until it reaches unsustainable levels, and then everything collapses.
None of this is easy to talk about. But avoiding the conversation doesn’t make the trade-offs disappear, it just makes them less transparent.
Paywall?
I’m glad this is getting attention. There are so many of us living with chronic pain who are swept under the rug by the healthcare system, particularly those who are female, racialized or otherwise discriminated against because of their identity factors. Society has demonized a lot of pain management treatments and blamed people for their pain, telling them it’s all in their heads. Because we can’t see pain, it’s easy to dismiss it.
We need to do better so that people in pain can live a comfortable and meaningful life.
Someone I know suffered pelvic pain for 5 yrs because the MALE GP was gate keeping an MRI exam
Finally, “he gave up”, sends an MRI requisition (bungled it the first time around which caused for a 3 mo delay)
The result: stage 3 endometriosis
Endometriosis pain as someone described it, is more painful than childbirth in some cases
I’ve heard people speak about, and I’ve experienced, something I call the „there there“ attitude in health care providers, that your experience of your own symptoms somehow is wrong or you’re overreacting and they „know better.“ In the article she mentioned one of the first doctors told her she should „chill out“ and I think that was less about her pain and more about her expressing her need for them to look closer.
Health care people use terms like „oh, health care is a cooperation and we’re all partners in it“ but that’s complete fiction. They say we’re partners in OUR health but immediately THEIR perception and THEIR ideas are the only options. It’s very „we’re partners but you know nothing so be quiet.“ That’s not a partnership.
And, in my end of Canada, if I declare I can’t work with my GP, I have to give the province a valid (in their terms) reason and then wait at the end of a 5-8 year queue before I’ll see another.
I lived with debilitating periods from 14 onwards. Throwing up in pain, going into shock, laying on the floor of the bathroom literally begging to die, living around my cycles and being absolutely terrified of what next month would bring. Never did my GP suggest a specialist, told me pain is normal. I was told that ER is not for menstrual cramps and I’d be laughed at.
Several times I passed out from the pain and my parents did take me to the ER. All they did was inject me with ketorolac and send me home. No more looking into what was causing the pain.
I went 23 years living this way.
Not until 37 when I finally decided to have a hysterectomy after having breast cancer that they found stage 4 endometriosis. It was everywhere. It was black and sinister looking. All those years I lost to this disease. All that pain that wasn’t in my head. I was dealing with pain greater than childbirth on a monthly basis and no one cared.
Our healthcare system doesn’t give a crap about women’s health. I was also told my lump was a cyst originally in my breast. Turned out it was cancer. Due to them leaving it for six months I needed a mastectomy.
Ah so she has fibromyalgia. That’s a tricky one for doctors. There’s actually no objective test for it and its all subjective reporting from the patient.
There was some debate whether its actually „real“ or purely psychosomatic. At this point it seems to be useful in so far as they go with it when they can’t actually find anything else to explain the problem, which takes time.
Not a good case to use to make any broad changes.
I had partial bowel blockages due to undiagnosed Crohn’s, every time I went to the ER they gave me antacid said it was heart burn, and when I asked for something for the pain they thought I was drug seeking.
Finally after a full blockage they they operated and sent me to a specialist.
Then when I sent for a follow-up to the surgery the student they send in before the doc said “ so you had bowel surgery because you swallowed pills“ WTF??
Oh look, it’s more paywalled garbage. Apparently her story isn’t that interesting if it’s subscribers only.
Which, surprise, fits with the systematic defunding of healthcare so privatization looks better everyday.
As someone who’s been living with a chronic spinal pain for 20+ years, I personally cant wait for AI and scanning tech to replace our unsympathetic hospital staff. Yea you cant see it, but I assure you, its real and no i don’t want drugs, I want you to fix it but all I hear is „Take some ibuprofen“
i went to my doctor with pain all over when i was younger . he basically told me to suck it up and wouldn’t give me any meds cause and i quote “ i looked like a junkie“ and that i was just there to scam for pills… i have PSA ..
edit: i was probably 16 when that happened . i spiraled into becoming an alcoholic and tried to kill myself multiple times. i smoke weed everyday and have since i was 16 (45 now) to deal with the pain .
I’ve been stuck like this for years. 2nd opinion after 1st opinion after 100th opinion.
It was the 100th opinion that finally looked at my MRI from before and was like, look there. It took one look and in one acupuncture treatment my pain was fixed for a few days for the first time in forever.
Fight for yourself cause no one else will.
I’ve found that younger doctors and old doctors have problems with diagnosing. Young ones over rely on their book knowledge and the old ones over rely on their personal experience. Neither will believe you if have something that doesn’t quite fit. To them 1 in 1000000 or even 1 in 10000 cases don’t exist, only stuff they’ve read about or stuff they’ve seen. Middle aged docs are a toss up, but your best bet for something unusual getting caught.
Can’t read the article because of the paywall. As someone living with chronic pain, I didn’t start getting the attention I deserved until I was officially diagnosed with endometriosis via laproscopsy. It took years, YEARS. Countless wasted and painful hours in the ER and wait rooms. I was unnecessarily sent around to other doctors because my pain wasn’t believed. I’m still waiting for surgery. My original OBGYN denied me care because „hysterectomies are only for women 45 and older“. There was a medical student in his office when he said that.
I was in a car accident almost 5 years ago. It’s been hell trying to navigate the „system“. Most just want to give you a pill (that doesn’t work anyway) and shove you out the door.
I had broken bones that I was told weren’t broken, then lied to and then told it was a good thing I wasn’t in a cast the last 6 weeks and there isn’t anything they could do for me now.
I went to a pain clinic, on the referral from a neck specialist, and they made things worse. There was also some shady stuff going on between the dr and pharmacy.
I avoid the medical system as much as possible. I’ve done every physical therapy possible, acupuncture, massage, yoga, exercise. I’m heading down to Atlanta in May to see a specialist. The virtual appointment I had with him was probably the only time I was actually listened to and given hope for treatment. All without drugs.
I have zero faith in, or respect, for our medical system.
Neurological conditions like that are brushed off and disregarded by doctors, employers, specialists, counsellors, caregivers, everybody. Doctors order the typical tests, they come back normal, and they tell you to try to relax more. They don’t really care, they aren’t curious, they aren’t compassionate. They don’t know what to do with it even after years of progressively worse symptoms, so they send you away and if you raise a fuss they call you difficult. Its brutal.
This is actually an excellent area for AI to help since AI has all the knowledge of the entire neurological and medical field. It can assess your data and build a credible plan for investigation and treatment which does the work that doctors simply can’t.
Late to the party on this one. I am male and suffer from chronic pelvic pain. It started in 2021. Very random onset and at a terrible time to be really needing help from a medical system overloaded with covid.
The initial chronic pain clinic I went to lost funding. The new one was run by the same people but I had to reapply. The wait time was 2.5 years.
I had to pay to get ahead for an MRI. It cost $2,500. Otherwise I was waiting 6 months.
I had to pay for a pain clinic in the states to get ahead with other diagnostic procedures (injections, steroids, nerve blocks). To date, I’ve paid at least $30,000 with some success. This was mostly in the US and was a couple years ago. I only just recently had the same procedure tried here. Wait time difference was 1.5 years.
I’ve had to personally reach out to every doctor I could to help from gynecologists to urologists to nephrologists. There is very little assistance from health care providers outside my province (sask) because each province handles their own healthcare.
That means if you suffer from rare chronic conditions you better hope you are in an area serviced by people that are:
1. Knowledgeable in the area
2. Don’t have a wait time longer than a year
3. Won’t charge you an incredible amount of money
I am 0/3 on these in my province and have had to pay a lot of money, waste a lot of time, and educate doctors who I’m working hard to even gain an audience with to usually be told they can’t help me since my condition is too rare/weird.
In Canada, with chronic difficult to diagnose pain, you WILL get shrugs and drugs until you are pacified enough to get out of the way of patients with a cold or cut. You WILL be deprioritized and left aside as a „difficult patient“. At least cancer patients get dedicated pain care.
I understand the difficulty in dealing with cases like mine and I feel like I have been very patient, but what other options do I have than to get bitter and cynical and probably apply for MAID eventually.
I want to scream but if I do then I’m „hysterical“ or „catastrophizing“. Well uh yea no shit. The care of chronic pain patients in this country is a catastrophe and I’m tired of giving it excuses when it feels like all I’m getting is systemic excuses to avoid investigating cases like mine.
I’m sure all the nurse practitioners they are bringing in are going to be able to diagnose complex conditions…
Hell, even when it is diagnosed, there’s no cures and they just assume every symptom is because you’re depressed or anxious. If you’re a woman you’ll see a huge difference in health care when you’re pregnant and the decline that comes with that care once you have your baby, cause they want the babies to be born but don’t care about the health of the mothers of those babies.
Patients bill of rights should be up in every medical office, and waiting room in the country.
I live with chronic conditions and basically every medical appointment is “we don’t know”.
Of course it went undiagnosed. She’s a woman. Women’s pain, symptoms and suffering are always dismissed, downplayed or called ‘normal’
I just completely gave up on Canada’s medical. I have become a medical tourist, getting instant treatment at a reasonable cost.
My GP never took my back pain seriously. Never wanted to prescribe me pain killers for the constant pain. Told me to stretch. He just didnt understand. I finally went to see a naturopath and he told me pain management is a really important part of dealing with chronic pain. He got me stronger pain killers and muscle relaxants. Felt so seen and glad i have the option if and when I need it to manage my pain
I have spinal stenosis and bulging/protruding discs in my cervical, thoracic and lumbar spine. I have psoriatic arthritis and issues with my sacroiliac joints in my hips.
I’m on AISH, so physio is not covered. The low income programs available allowed me 5 free sessions.
I told my doctor that it’s gotten to the point that I can barely work a 5 hour shift without coming home in pain and crying. It feels like my hips are splitting and now I’m having issues in my thigh.
I was told to work on my mental health to accept the pain better
Doctors can fuck right off.