Difficult life experiences: Many have never told anyone
Many people with long-term pain and exhaustion have wondered if their illness could be related to difficult things they have experienced in their lives. But it's only fairly recently that research has emerged on such links and even explanations for how difficult life experiences can lead to illness.
"People have suspected that there is a connection, but today we know that it really exists," says Britt Bragée, a physiotherapist and researcher at Bragée Clinics.
"In diseases such as fibromyalgia and ME/CFS, for example, there is clearly a higher incidence of difficult childhood experiences than there is in, for example, rheumatism sufferers, or in the normal population at large. This does not mean that everyone with ME/CFS or long-term pain has difficult experiences in their background, but a very large proportion do," Britt Bragée continues.
Difficult childhood experiences can be about abuse or mistreatment, but also about being abandoned early in life and not having a safe adult to turn to. It can also be about growing up in a family with a lot of fights, maybe even abuse and fighting. When a child is exposed to these things, it is so distressing that the stress systems "kick in", both neurologically and hormonally. It is allowed to go on far too hard and far too long, leading to exhaustion in the systems. Because children's nervous and hormonal systems are still being built up, built-in effects are created. This makes it difficult for the person to get back to more neutral equilibria in their systems, even in the future as an adult. Having such built-in effects makes a person more vulnerable to illness, as the immune system weakens, the level of inflammation in the body increases, sleep and recovery problems, muscular pain, abdominal pain and also changes in the brain that lead to poorer memory and concentration are possible.
"This is often not recognised in healthcare. And if the healthcare system doesn't know the background causes of a disease, it doesn't know how to treat it," says Britt Bragée.
There has been speculation in the past that fibromyalgia patients could have trauma in their background, but this has mostly led to the disease not being taken seriously as a physical illness and to those who have had fibromyalgia feeling singled out. The ways in which trauma can affect the physical and how treatment could be designed to take this into account were not known.
"Now that so much more is known about the physiological effects of difficult experiences, we can use that knowledge," says Britt Bragée. The most important thing is to get a really good result for the patients, so that as many as possible can feel better, reduce their sick leave and return to work."
"At Bragée Clinics, we work in an area with very sensitive patients and we always need to be very careful and aware that difficult experiences can be part of the baggage. One of the people who has come furthest in his experience of trauma and from whom we draw knowledge, is the trauma researcher Bessel van der Kolk in the US. He sees trauma primarily as a physical problem and advocates treating it with physical methods first and foremost, not with drugs or talk therapy. They can have an important place later, but only after the bodily systems have come into reasonable balance."
Bessel van der Kolk's now classic book on trauma and the body, The Body Keeps the Score, has recently been published in English and is entitled Kroppen håller räkningen (Akademius förlag, 2021).
As an emphasis on rehabilitation, Bragée Clinics teaches methods of calming and down-regulating the nervous system, methods that can also mitigate the effects of trauma. All staff members are aware of the high prevalence of trauma in patients and rehab participants.
Only a few of the children who experience trauma tell an adult, as well as a few adults who tell their caregivers about trauma. Children and young people do not expect to receive support, and adults in care settings feel that there is no time or interest to talk about such experiences.
"A few years ago, we looked at how rehab participants had filled out their expression of interest forms with us. 48% had ticked the box for 'Abuse or other difficult experience'. But during rehabilitation, as confidence grew, far more people raised the issue, and it turned out that as many as 75 per cent had experienced physical, psychological or sexual abuse or experienced violence between adults, difficult separations and abandonment."
"Later, we did surveys to see if patients would or would not want to be asked if they had had difficult experiences. They answer that they do. They are happy to be asked, whether or not it might lead to any specific treatment. So the need to just highlight it and keep it in mind during treatment is pronounced."
Some facts:
- The association between difficult childhood experiences and fibromyalgia is high for both women and men diagnosed with the condition. Also in ME/CFS, the proportion with severe childhood experiences is higher (Renouf, 2020 and de Venter, 2020) and in Bragee's own surveys too, ME/CFS patients marked many strong childhood stressors, particularly high for abandonment.
- Current research includes: Maud de Venter (Clinical Effects of Childhood Trauma in Affective Disorders and Functional Somatic Syndromes, Faculty of Medicine and Health Sciences, University of Antwerp 2020) and Alysha Renouf (Chronoc Fatigue Syndrome: Holistic Understanding and the Impact of Social Support on Distress, Department of Psychology, Memorial University of Newfoundland, 2020)
- The Swedish pain physician Gunilla Brattberg has already published a study (Do stressful life events lead to long-term sick leave in pain patients? Certec, LTH, Lund University, 2005) has shown a link between trauma and pain leading to inability to work. 71% of the group of long-term sick pain patients were found to have experienced abuse and/or violence, compared with 37% of the healthy control group. Statistically significant differences were also found for life events such as accident, foster care, severe divorce, bullying and more. Brattberg's conclusion is that pain treatment is not enough, patients must be asked about previous stressful life events and these must be taken into account.
- In the US, a very large study on difficult childhood experiences has been conducted for many years and has been able to link them to some common diseases, such as heart and lung disease, cancer and diabetes (Adverse Childhood Experiences study, ACE).
