Content warning: This article contains personal accounts of child sexual abuse and domestic abuse that some readers might find distressing.
In Poland, a patient can’t even get a diagnosis of a devastating and debilitating disease, despite it rendering him bed-bound for the past several years. This is because, there, the healthcare system doesn’t recognise the chronic illness in question – severe myalgic encephalomyelitis (ME/CFS) – at all.
As a result of this, to date, he has been unable to access Polish social security for support. This has left him in the ‘care’ of his abusive mother. Now, he is urgently seeking a Poland-based advocate to help him navigate the country’s medical and social support systems. With their help, he hopes to acquire the financial means for a local care-giver, and gain independence away from her abuse.
Karol: Severe ME/CFS patient in Poland
Myalgic encephalomyelitis (ME/CFS) is a chronic systemic neuroimmune disease which affects nearly every system in the body. It causes debilitating symptoms. These typically include influenza-like symptoms, cognitive impairment, multiple forms of pain, and heart, lung, blood pressure, and digestive dysfunctions.
In particular, post-exertional-malaise (PEM) is the hallmark feature of ME. This involves a disproportionate worsening of other symptoms after even minimal physical, social, mental, or emotional exertion.
Karol – who lives in Poland – developed ME at the age of ten. This was after contracting a serious “stomach bug” for five days. He hasn’t been able to confirm the virus, but he remembers that the sickness, characterised by fever and severe gastrointestinal problems, made him feel “so exhausted”, that he “thought he was gonna die”. He now wonders if it might have been an Epstein-Barr infection – a common viral trigger for ME.
After this sickness episode, his undiagnosed ME was mild at first. However, at the age of 13, his symptoms started getting worse:
my head started, went kind of lax, started bobbing, couldn’t hold it up straight, basically. And at the same time – migraine with aura, really bad headache and brain fog.
The symptoms Karol described are typical of a common ME co-morbidity known as craniocervical instability (CCI). This involves increased mobility at certain junctions in the neck.
Now, age 28, Karol lives with severe ME. For several years, he has been entirely bedbound and functionally blind. The latter is down to his extreme light sensitivity – meaning that he must wear an eye-mask 24/7 to block out the light, which otherwise causes him intense headaches and agonising pain.
At least 25% of people live with severe ME. In these cases, people living severe ME are mostly, if not entirely permanently bed-bound or hospitalised. On top of this, they are often unable to digest food, communicate, or process information and are fully dependent on others for their care.
Karol also lives with Coeliac disease and postural orthostatic tachycardia syndrome (POTS), and chronic autoimmune polyneuropathy. The latter is a neuromuscular disorder in which the body’s immune system attacks the peripheral nervous system. He also has small fiber polyneuropathy (SFN). It involves damage to the small nerve fibers outside the central nervous system that regulate autonomic functions such as heart rate and blood pressure. It is common in both Coeliac disease and POTS.
No recognition for ME/CFS in Poland
Throughout all this time, Karol has been unable to get a formal diagnosis for his severe ME/CFS, and has only started getting diagnoses for the majority of the other chronic health conditions he clearly lives with as he has become progressively ill. However, a majority of clinicians still do not recognise these regardless. He told the Canary that he first learned of ME himself at the age of 17. However, he soon found out that Poland’s medical system does not have it listed as an official disease entity:
when they check out their medical system, whatever they use for the information, I told them ‘encefalopatia mialgiczna’, which is a literal translation of myalgic encephalomyelitis, and they couldn’t find that in their system. So they think for days that I’m bringing up this disease that doesn’t even exist, but they only tell that to me much later. So they think I’m entirely cuckoo.
What this has meant in practice for Karol has been a catalogue of catastrophic care at the hands of Poland’s medical professionals.
When Karol initially approached the hospital for answers, he explained that clinicians had entirely dismissed him, and put it down to the serious bullying he was experiencing at school. A child there had been beating him, but nobody was intervening to stop this. It meant clinicians passed off his symptoms as psychological, suggesting he had agoraphobia on the basis of him:
not wanting to leave the house and not wanting to go to school.
Consequently, instead of taking his debilitating symptoms seriously, they committed him to a psychiatric ward for three and half months.
They threatened this again at the age of 23 when he became dangerously unable to eat. He went into hospital requiring a jejunostomy tube (J-tube) – a feeding tube directly into the small intestine – for nutrition:
I end up in the hospital because my weight is so low – I believe I was 43 kilos and I’m a tall guy, 196 centimetres tall. So I end up in the hospital and my weight was so low because after the stomach reduction and with the ME, I couldn’t get enough food in.
The hospital ultimately refused to set up the J-tube, and sent him home without any help.
Atrocious ableist abuse from hospital staff
Like many arrogant and uninformed medical professionals overseeing severe ME/CFS patients, his healthcare team was convinced it had a psychological basis. Often, clinicians erroneously apply anorexia or other eating disorder diagnoses to severe ME patients. Unsurprisingly then, this is exactly what doctors did to Karol as well.
Of course, this is palpable nonsense in terms of Karol’s inability to orally consume adequate nutrition. This would have come down to a combination of gastrointestinal causes and other symptoms restricting his ability to eat. People with severe ME often don’t have the physical energy to do so, and are suffering a suite of pain and gastro-intestinal symptoms, and dysphagia (difficulty swallowing). Meanwhile, his POTS would have inhibited him sitting upright. It’s also likely Karol could have a number of undiagnosed commonly co-occuring conditions affecting all this further.
And during this hospital stay, the chief nurse leaned into this dangerous psychologisation of his physiological illnesses. While in charge of his care, she verbally and medically abused him.
Karol told the Canary how she would raise his regularly mechanized bed:
just because I didn’t want it to be, just because I wanted it to be flat, she would put it up.
Forcing his bed up and sometimes into “almost” sitting position would trigger episodes of his POTS.
On another shocking occasion, she removed Karol’s eye-mask while he was signing some papers. He explained that:
So, they gave me a pen and I started writing my name and she made some unpleasant noise, like I guess my writing was crooked or something. And this woman just took my mask off. And I experienced such pain, such headache.
I was screaming. I turned my face towards the bed. I begged them to put it back on. They wouldn’t. And then eventually they did.
For Karol, with his extreme light sensitivity, this amounts to nothing less than atrocious ableist abuse.
Gaslighting, disbelief, and domestic abuse
All the while, Karol’s health has only continued to deteriorate across the board. And this has left him not only vulnerable to the healthcare system’s torturous treatment, but also abuse from his primary care-giver: his mother.
From the start, Karol’s mum denied and dismissed Karol’s chronic illnesses. He told the Canary that early on, she had treated his health like it was “really inconvenient”. When he first started getting tests at the hospital, she spent:
that entire time anti-advocating for me, saying I’m insane and that I’m probably just making it all up to get out of school.
His mum’s denial of his health conditions continued across more than a hundred doctors visits between the ages of 13 and 18. Karol told the Canary that:
It’s all kind of like a script where we go there and my mum is anti-advocating, saying I’m crazy and psychologically ill. And this kind of functions in the way of just this constant humiliation where the doctor is the authority figure here. And my mum does let me go there and takes me there because she’s like, well, if you could prove it that you’re actually ill, then, you know, by getting the doctor to side with you and say that there is a disease like that, then maybe things would start happening for you.
But since you can’t, you know, it’s just this constant psychological torture for me. And I feel like I have to keep submitting myself to this because, you know, how else am I going to get help? And I was ill, I couldn’t function properly with life at school. I was very tired.
He described how his mum put him in a “constant barrage of situations” gaslighting him to:
believe that I’m just a bad fella, you know, a bad person.
Severe ME has meant no escape from sexual abuse
However, the psychological abuse was only part of it. Karol is a survivor of child sexual abuse (CSA). Abhorrently, his mum was the perpetrator, and Karol told the Canary that she has continued to abuse him into adulthood. Horrendously, she had restarted abusing him when he became bed-bound with severe ME/CFS:
At that time, my mum was beating me again, just like in childhood, and hurting me, touching. Basically, she started doing that again when I became bed-bound, but she was abusive all along.
With Karol’s consent, his friend detailed more about the disgusting abuse his mother regularly subjects him to:
She pulls at his hair, sits on his feet (he has polyneuropathy so this is very painful), will lift his blanket to grab his testicles and pull on them, will turn off the heat in his room, and will withhold his medication.
Karol has Celiac disease, and his mom weaponizes this against him by refusing to let him adhere to a gluten-free diet.
Of course, this has led to serious health complications for Karol, as his friend described:
This has led it to progress to the point where his bowels are very damaged, he doesn’t absorb nutrients nearly as well, he has rectal bleeding, and has Dermatitis Herpetiformis (chronic itchy skin rashes made of bumps and blisters) all over his body. He says he currently has around 30 holes in his skin because of this, whereas before when he could adhere to a gluten-free diet, he had only one or zero at a time.
Obviously, the likely intestinal damage from his forced gluten diet also goes some way to putting his weight loss and malnutrition in context too.
Karol bravely opened up about all this because in his own words:
abuse feeds itself on the silence.
Dangers for disabled people unable to leave DV
Karol isn’t the first person living with severe ME/CFS trapped in an abusive situation that the Canary has reported on. In May 2024, we first spoke to severe ME patient Anna who lives in Australia, trapped in an abusive household. As it stands, Anna’s family still continues to mete out abuse, and neglect her basic needs on a daily basis.
Then, in September, 26 year-old Katiana told the Canary about her parent’s psychological abuse, gaslighting, and denial of her severe ME. She is also still living with her abusive parents, because no in-country help has been forthcoming since.
Research has shown that disabled people are more likely to experience domestic abuse than non-disabled people. For example, UK Office for National Statistics data found that rates of domestic abuse from 2019 to 2020 were nearly three times higher for disabled people.
What’s more, disabled people can have added hurdles getting away from their abusers. For one, their dependency for daily care means that without alternative care support waiting, they are unable to leave.
Moreover, disabled survivors of domestic abuse often face a number of additional barriers getting out of abuse. This includes for instance, access to transport, finances, and safe, supported accommodation.
All this once again applies to Karol. Without formal recognition of his severe ME and other conditions, Karol has not been able to access Poland’s social security system. And without the financial means to employ a new carer, he can’t get out of this abusive situation either.
Karol needs an advocate for ME/CFS in Poland – can you help?
Right now, Karol feels his only recourse is to find an advocate. It’s why he reached out to the Canary with his story. His friend explained to the Canary that while:
Karol has online friends from around the world trying to help him, but without proximity to him, the requisite language skills, or knowledge of Polish support systems, we are mostly powerless to help.
So, ideally, he hopes that someone will come forward to help him navigate the Polish government, medical, and social security systems. He lives in the Natolin district of Warsaw, so is looking for a caring advocate based in Warsaw. However, he would be grateful for support from anyone in Poland, or who understands Poland’s various government and healthcare infrastructure.
If you are someone, or know of a person matching the above description who can help Karol, please reach out to him at his email address: [email protected]
It’s appalling that in 2025, a healthcare system, anywhere, still doesn’t recognise ME/CFS as a formal diagnosis. Moreso given that the World Health Organization (WHO) has classified it as a neurological disease since 1969.
Of course, Poland is hardly the only country playing catch-up. Plenty of other healthcare systems across the planet continue to trivialise the disease, and push harmful treatments on patients.
Moreover, diagnosis for many people living with severe ME has often made little difference – as evidenced by cases of severe ME patients in the UK and elsewhere. Clinicians the world over continue to dismiss, disbelieve, and neglect severe ME patients and those with related chronic illnesses. Overall, psychologisation persists – and that’s tragically the case wherever in the world a person with ME happens to be.
What’s more, as Karol’s situation demonstrates, medical abuse and gaslighting invariably feeds domestic familial abuse through a vicious cycle of psychiatric stigma. Karol’s story is another harrowing reminder that it’s not just the chronic illness itself, or the lack of curative or therapeutic treatment putting severe ME patient lives at extreme risk. Sometimes, abusive family, friends, or care-givers are doing this too. And an uncaring state and healthcare system that leaves people with nowhere else to turn is often invariably, largely to blame.
Featured image supplied
