A woman who was sick for nearly two decades says a lack of medical help meant she deteriorated until her organs began to fail and her seizures threw her around “like a rag doll”.
Dagny-Magdalene Jæger Markussen suffered from constant exhaustion, severe pain and recurring infections.
But the 33-year-old says doctors repeatedly dismissed her concerns and framed her symptoms as psychological.
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As her condition worsened, she began suffering increasingly violent seizures.
“My body had been deteriorating for a long time,” Dagny-Magdalene told Need To Know.
“I’ve been sick for 18 years and was first diagnosed with lupus at 17 years old.
“I was living with a general sense that something systemic was wrong.
“But after only a few years with minimal treatment and minimal betterment, the doctors removed my diagnosis and stopped all treatment.
“I kept begging for help, but the doctors completely ignored me, and even refused to do basic testing.
“So I felt like I didn’t have any other choice but to spend all my savings on private healthcare.
“Then I felt like the public health system got offended – and would just blow me off.
“I got accused of being a drug addict, mentally ill and a hypochondriac with no true medical backing.
“I felt blacklisted.”
In October, Dagny-Magdalene’s health reached breaking point – and she was hospitalised following days of uncontrollable seizures.
The make-up artist from Norway recalled: “One night in October, my partner had gone to take a shower.
“When he came back, he found me slouched down next to the bed.
“I was completely frozen in a sitting fetal position and silent.
“I’d been going to A&E with seizures for 18 years, and never been taken seriously.
“People with chronic illnesses and long-term diseases get so used to the pain that we don’t scream, we go silent.
“Anyone who’s generally healthy and experience what they perceive as a 10/10 pain would scream, but for us the 10 is silent, it’s all-consuming.
“We’re unable to do or say anything. This is well documented, but still the doctors dismiss it.
“The seizures left me with zero control over my body and I was thrown around like rag doll who was having an exorcism.
“Not only was I deadly sick, I was being [gaslighted] as anxious, dramatic, with my problem being psychosomatic.
“The frustration wasn’t only about being misdiagnosed, I wasn’t being heard.
“Slowly I realised that my persistence and frustration was being interpreted as pathology.
“I was desperate, not deranged.”
After realising she wasn’t being taken seriously, Dagny-Magdalene and partner Eirik Bratli moved to Bali in Indonesia, a decision she believes saved her life.
She was admitted to hospital there and medics discovered that her organs were failing.
Dagny-Magdalene was eventually diagnosed with mixed connective tissue disease (MCTD).
It is an autoimmune disease with a wide range of clinical symptoms, which affects far more women than men.
She is now undergoing immune-modulating treatment – and believes years without care allowed her condition to progress unchecked.
Dagny-Magdalene said: “Going abroad wasn’t a leap of faith, it was a calculated decision.
“I needed clinicians who were willing to look at the whole picture, actually hear me, and be bothered to actually read my medical history.
“It just became blatantly obvious that I would die if I stayed.
“I could feel it within every cell in my body. And I was right.
“When I was admitted to the hospital in Bali, my organs were failing.
“In Bali, the clinicians approached my body as a system, a whole.
“The different departments collaborated, they spent time and they asked detailed questions.
“They ran tests that had never been offered to me before. They didn’t assume, they investigated.
“And most importantly, they actually listened. Even with the language barrier, I’ve never been more heard, seen or understood.
“A diagnosis doesn’t fix everything, but it restores reality.
“It confirms that what I was experiencing was real, measurable, and physiological, not imagined or exaggerated.
“It wouldn’t have needed to go this far, my autoimmune disease was allowed to grow and mutate over the years.
“I never needed to be this sick.”
Looking back, she added: “I’m relieved, but also angry.
“Relief because I finally have an explanation that makes sense of my body.
“Anger because this diagnosis could have been reached years ago.
“Angry because I lost 18 years of my life.
“A diagnosis is everything when you’re sick, without it, you don’t get treatment.
“Healthcare systems fail people, particularly women with complex, non-linear illnesses.”
Dagny-Magdalene is now making a documentary about her experience, in the hope it will have a positive impact.
She added: “I’m not just doing it for me, but for every woman struggling to be heard.
“For every woman who feels invisible within their own healthcare system.
“Going abroad for care is often framed as privilege or desperation.
“In reality, for many patients, it is the only remaining option when their own system stops listening.
“I have nothing left, and I’m in crushing debt and I’ll have to start my life from scratch at 33, because one man wrote one sentence in my medical journal.”
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