With pain as a driving force – from refugee to professor

When Bijar Ghafouri came to Sweden at the age of 17, she had already fled many times before, to new cities and new countries. The difference was that here there was a sense of security.

“I felt I could stay here. I don’t have to flee anymore.”

Being constantly displaced, her schooling was fragmented. New classes and subjects that needed to be retaken. As she came to Sweden without her upper secondary school grades, she had to go through the entire upper secondary school at Komvux adult education. She quit several times. The course books were expensive and sometimes she had to work in home care to make ends meet. 

After finishing her studies at Komvux, the road was open to studying at university. Her husband Mohammad Omar had been offered a job in Norway, but they agreed to focus on her education, rather than moving again.

“I come from a background characterised by a culture of honour, where many believed that a woman who is married and has children should primarily devote her time to the family and not to studies. I really wanted to study, because education is very important to me.” 

When she started the chemistry program at Linköping University, they had a 2-year-old daughter. Another daughter was born while she was studying. Mohammad brought the children to campus so that Bijar could breastfeed during breaks. They lived on her study grant. It was a tough time.

“My husband has been very supportive. Also, I’ve always tried to involve my family. The kids were with me all the time when I was studying. They loved to play in Märkesbacken at the university and every time I’d sat an exam we celebrated in the evening.” 

Celebrating an exam meant that the whole family slept on a mattress in the living room, which the girls loved. They had popcorn and played together – one of the children’s favourite games was piggybacking on their father. As she had to resit many of her exams, there were many sleep-on-mattress celebrations.

She attributes her continued career in research to having been in the right place at the right time. The university promoted protein research and the mass spectrometry method, which she used in her degree project. She was asked if she wanted to become a doctoral student. She said no. 

“I didn’t know what doctoral studies were. I’d just graduated and felt that I’d had enough of education.”

But the researcher who was looking for a doctoral student was told by one of Bijar’s classmates that she had completed her university programme while having two young children. He came back and said: “Then you can manage doctoral studies as well.” And that is what happened.

“I’ve realised that I’m a person who fits in academia. I’m always looking for new challenges and opportunities to use my imagination. Sure, you acquire new knowledge all the time, but that’s no good if you just accumulate knowledge without using your imagination to find new opportunities and solutions.”

Given that she is fundamentally a chemist, it is perhaps a little surprising that Bijar Ghafouri is researching pain. More specifically, she and her research group PAINOMICS are studying biological changes in long-term pain conditions. These include fibromyalgia, whiplash pain or pain following nerve damage. 

The researchers measure a variety of molecules, such as proteins and fat molecules, in blood, saliva and spinal fluid. They can also take samples from the pain-affected muscle.

“We can visualise that something is happening in patients with long-term pain. The molecular profile in the different body fluids does not look the same for a patient compared to a healthy person.”

Patients at the Pain and Rehabilitation Clinic at the University Hospital in Linköping are asked if they want to participate in the research. A large percentage say yes. And it is the contact with people that makes Bijar Ghafouri convinced that she will never tire of doing research.

“I don’t want to give up, because I see the patient’s face in front of me.”

One test that some study participants get to do is to move small wooden cylinders on a board for twenty minutes. For a healthy person, it’s a monotonous and boring task, but it doesn’t hurt. For patients, the test triggers the worst possible shoulder pain. Bijar Ghafouri recalls a woman crying while performing the test.

“I reminded her that she could stop if it was too painful. But she wanted to finish it, even though it hurt so badly that she cried. She said it meant so much to her that someone finally believed that she really was in pain, that it wasn’t just her imagining things. This has been with me throughout my research journey.”

Finding out which molecules are affected by chronic pain is pure detective work. The goal is to develop better tools for diagnosing and treating pain conditions.

“Today, for example, all fibromyalgia patients are lumped together. But we see in our research that there are subgroups within the large group that differ from each other.”

Without the close cooperation between the university and the region this research could not be done. In many long-term pain conditions, psychosocial parameters are also important.

“We look at the whole picture and want to take all factors into consideration.  We don’t think it’s just about molecules, we must also take into account what the patients themselves describe. I hope that soon we can define different subgroups and contribute to better ways of diagnosing and treating their pain.”

Samples from the pain patients in Östergötland are collected in a biobank. Work is now underway to extend this biobank to the whole of Sweden.

“Many years ago when I started, no clinic was interested in this kind of research. But interest has increased as we presented our results. I’m very proud that we’ll soon have a national pain biobank.”