Migraine sufferer says she was seen as a drug addict

Thelma Lind Karlsdóttir, 29, has lived with severe migraine for almost her entire life and says the condition has left her with greatly reduced quality of life. She told mbl.is that she has spent years caught in a cycle of illness-related absences from work and struggling to get support from the healthcare and welfare systems.

“I began having migraine attacks when I was three or four. They were mostly abdominal migraines, which involve severe vomiting and are very common among children,” Thelma said. Doctors initially suspected reflux or another condition, and she was not diagnosed with migraine until she was five, after other causes had been ruled out.

Not recognised by the system

Thelma said the healthcare system’s first response often seemed to be no. She also found herself in a situation familiar to many people with chronic illnesses: she was not considered ill enough to qualify for a disability pension.

According to Thelma, the eligibility criteria primarily focus on musculoskeletal problems and mental illness, while migraine falls into neither category. She said the condition is not properly recognised by a system designed around damaged musculoskeletal function, declining physical ability or mental ill-health.

“I scored much higher for mental illness because of the migraine, and eventually my disability pension was approved on that basis,” she said.

A group of migraine patients in Iceland has now established the Icelandic Migraine Association and elected a board. The group says people with migraine have lacked a clear public voice, received limited recognition and been denied treatment or support because they do not fit the system’s categories.

Attacks began in childhood

After receiving her diagnosis, Thelma was quickly referred to a neurologist and given preventive treatment. She missed a great deal of school during kindergarten and primary school.

“There were months in kindergarten when I attended only four days,” she said. Over time, however, the attacks became more manageable and predictable, depending on whether she took pain medication or rested.

That period proved to be only a temporary reprieve. Puberty and the hormonal changes that came with it brought a severe worsening of her condition.

“Migraine is a women’s illness because of female hormones. I went from having attacks three or four days a month, when I was completely incapacitated, to going to the emergency department every week because it was impossible to control the pain during the attacks,” Thelma said.

She added that the situation also affected her mental health. She was sent to a psychologist in the 10th grade.