Unfortunately, most of us will experience events which we find traumatic during our lives. These events are wide-ranging, encapsulating many life-changing situations that can affect us emotionally and physically, with the effects being felt for years thereafter. The impact will differ depending on the individual, the nature of the event and the support network that is available to them. Such is the emphasis on individuality, what one person finds traumatic and deeply scarring, the next may not.
That said, for people with MS there is some common ground. A recent survey conducted by the charity MS Trust found that over half of the respondents felt MS had a negative impact on their mental health, either moderately or severely. Just under 95 per cent of respondents stated that their MS diagnosis had altered their lives.
In our booklet ‘Mental Health and MS’ we look at how an MS diagnosis can impact mental health in many different ways. For example, in the early post-diagnosis days, some may feel a sense of guilt, upset, frustration, anxiety, grief, loss and sadness that things have changed, and may feel stuck or unsure of how to move forward. There can be a real feeling of life suddenly seeming out of control, uncertain, scary. It follows that being diagnosed with a life-changing condition such as MS can be a traumatic period for many.
In conversations about trauma, we often hear of the term PTSD, which in very basic terms is the impact that a traumatic event, or combination of events have on our emotional and mental wellbeing. Some of us may instantly associate it with military veterans, or those who have served in frontline emergency services. While it is certainly the case that people from these types of professional backgrounds may be impacted by PTSD, it may come as a surprise to learn that the rate at which it impacts the general public isn’t too far behind. Recent figures show that almost eight per cent of UK military veterans are affected by PTSD compared to a rate of four per cent among the wider UK population.
Looking deeper into the signs and symptoms of PTSD, these are a complex mix of the emotional and physical. One of the more common symptoms is known as ‘re-experiencing’ and is where a person experiences distressing memories, thoughts and flashbacks of a particularly traumatising event. These thoughts can be accompanied by physical indications such as nausea, excess sweating and pain.
Re-experiencing is just the tip of the iceberg when it comes to PTSD symptoms. Other key signs which may indicate that someone is impacted can be an overwhelming negative change in their mood, including feelings of guilt and blame, panic attacks, self-destructive behaviour, avoiding situations, people and places which remind them of a traumatic event or time in their lives.
PTSD symptoms can be incredibly complex, as mentioned previously, and may vary over time in terms of pattern and intensity. People affected may experience periods where the impact lessens, followed by more frequent and intense episodes. These may be triggered by perceived threats to which a person associates them, either consciously or sub-consciously, with traumatic historical events.
While we still do not have any definitive answers as to why people develop MS, research suggests that there are a number of genetic, environmental and viral factors involved. Of late there has been a growing body of evidence which links the development of MS in individuals to both psychological and physical trauma.
In 2022 New Pathways magazine reported that a large-scale Norwegian study found significant evidence which linked childhood trauma to MS development in female adults. Researchers looked at participants in the Norwegian Mother, Father and Child cohort study, which took place between 1999 and 2008. Almost 78,000 women took part, with their health being monitored until 2018.
Childhood abuse information was obtained by questionnaires and MS diagnosis was gathered from linked national health registry data and hospital records.
After adjusting for other risk factors such as smoking, educational attainment, obesity and household income, it was found that women who had experienced childhood abuse were more likely to develop MS. The risk was highest for victims of sexual abuse at 65 per cent, followed by emotional abuse at 40 per cent and then physical abuse at 31 per cent.
It was hypothesised that the elevated risk of an individual developing MS following exposure to traumatic abuse during childhood may have a biological explanation. The authors drew on studies which linked childhood trauma to an imbalance in the hypothalamic–pituitary–adrenal (HPA) axis, resulting in oxidative stress, and triggering a state of inflammation well into adulthood. For clarity, the HPA axis is a key complex biological system which is responsible for vital bodily functions such as hormone balance and stress responses. When its function is compromised, it can lead to a dysfunctional immune system, increased inflammatory responses and a variety of serious health conditions.
Further studies add weight to the link between childhood trauma and the development of MS in adulthood, such as a 2022 systematic review which was undertaken by scientists at the University of Michigan in the United States. This review looked at 12 previous studies that focused on childhood trauma and its role in the development of MS and other neurological conditions during adulthood. It was found that people who experienced abuse as a child tended to develop MS earlier than others. They also experienced more elevated relapse rates. The authors concluded that there was evidence of significant relationships between trauma experienced as a child and the risk of developing MS, however they recognised that more studies were required to underpin this understanding.
So far, we have learned that trauma as a child can increase an individual’s chance of developing MS later in life. The same logic applies to trauma that we experience as adults, with one large-scale study finding that stressful life events can increase the risk of an individual developing MS by up to 30 per cent.
More specifically regarding people with MS, post-diagnosis trauma can pose a significant problem. The causes of this type of trauma will differ for each and every one of us. However, the commonality is that if left unchecked, it can have a detrimental impact not just on our emotional wellbeing, but also our physical health, given its impact on our body’s immune system and inflammatory responses.
Post-diagnosis trauma is multifaceted and can be influenced by an individual’s pre-diagnosis experiences. This may include the nature of interactions with health professionals whilst undergoing diagnosis, the information which they had been exposed to during that period and the feeling of uncertainty, concern and fear for what is, at that point, the unknown.
Moving on, once an MS diagnosis has been received, a whole new set of emotional challenges are then thrown at us. Again, these will differ from person to person, but some common ground may naturally include worries about our future health, potential impact on our employment, on finances and how the diagnosis will affect family life. This is not to suggest that once a diagnosis has been received, the impact of pre-diagnosis trauma just melts away. For many, the most traumatic of experiences will leave emotional scars which need healing, even if the matters which sparked the concern have been resolved.
In 2022 the results of a survey were presented at the 38th European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) congress, held in The Netherlands. This survey was developed and hosted by the social media platform Shift.ms in collaboration with clinical MS experts based at the Barts and London School of Medicine and Dentistry. Its aim was to find out more about how people with MS are affected by PTSD.
Just over 1,000 people responded to the survey, with stark and concerning results. Over 60 per cent of respondents reported symptoms associated with MS related PTSD, with only 18 per cent having received a formal PTSD diagnosis. The most common PTSD associated symptoms experienced were anxiety, depression and poor concentration. Concerningly, 85 per cent of respondents reported being affected by MS induced anxiety.
The study found that there was a clear connection between PTSD in people with MS and their diagnosis experiences, suggesting more empathetic, client-centric approaches should be considered by healthcare professionals. Furthermore, the authors concluded that clinicians involved in the diagnosis process should actively signpost patients to relevant support, such as counselling or therapy, as respondents had reported that accessing these helped them to cope once they had been formally diagnosed.
It has been evidenced that PTSD is also a modifiable risk factor for MS relapses, MRI activity and disability progression. This makes sense given the relationship between trauma and its biological impact on our bodies, which we explored earlier.
All things considered, it is salient to suggest that early PTSD diagnosis, and access to person centred support, could hold great sway in the effectiveness of MS management plans for many.
In the UK the National Institute for Health and Care Excellence (NICE) provide guidelines for the clinical diagnosis and treatment of PTSD in relation to children and adults. These guidelines outline the methods that are recommended for both the prevention and treatment of PTSD, including psychological and medical interventions, with the latter only recommended for people aged 18 and over.
Cognitive Behavioural Therapy (CBT), or more accurately, trauma focused CBT (TF-CBT), is one of the two forms of psychotherapy that NICE recommend should be considered to help people manage the impact of PTSD. TF-CBT is a form of talking therapy that has been used for some time by NHS psychological services for both the treatment and prevention of PTSD.
The most recent addition to the arsenal of PTSD treatment therapies available to NHS patients is called Eye Movement Desensitisation Reprocessing (EMDR) therapy. Far from being a talking therapy, EMDR uses the concept of bilateral stimulation, in the form of rhythmic movements, that are thought to help people effectively process traumatic events.
To start the conversation about accessing support for managing trauma speak to your GP. They should conduct an initial assessment that will help them determine the next course of action. If necessary, they will then refer you to a specialist mental health practitioner who is qualified to diagnose PTSD and devise an appropriate treatment pathway.
The MS-UK website also hosts a directory of fully qualified, registered counsellors who have all undertaken our ‘MS Awareness’ and ‘Counselling People with Multiple Sclerosis’ eLearning courses.
More information
The following are links to where you can find more dedicated information about PTSD and access further support.
PTSD UK – https://www.ptsduk.org
MIND – Post-traumatic stress disorder (PTSD)
Mental Health UK – Post-traumatic stress disorder (PTSD)
