By recognising the signs of PTSD with an MS diagnosis and delivering the appropriate support, patients are empowered to focus on improving their quality of life, says Dr Roy Aloni, head of Psychological Unit, Multiple Sclerosis Center, Sheba Medical Center, and BelongMs expert
Multiple sclerosis (MS) is an autoimmune disease of the central nervous system that affects both the brain and the spinal cord. With MS, the immune system attacks myelin—a protective layer that covers the nerve fibres— allowing the degeneration of groups of neurons, which affects a variety of functions.
MS-Related Stress
In most cases, MS is diagnosed at a young age, which can be a significant emotional burden with extensive psycho-social consequences that affect the patient’s quality of life.
Beyond the multitude of physical symptoms and challenges MS presents, the impact of the disease on a patient’s mental health cannot be ignored. Diagnosis and living with the disease can be as traumatic as the mental scars more traditionally associated with war, terrorism and crisis.
Most of the scientific literature about the emotional effects of MS focuses on anxiety and depression, hardly addressing coping with the traumatic aspects of the disease.
In the last few years, limited research has finally begun to explore Post-Traumatic Stress Disorder (PTSD) associated with MS.
PTSD is defined as a mental health condition that is triggered by a terrifying event—either experiencing it or witnessing it. Symptoms may include flashbacks, nightmares and severe anxiety, as well as uncontrollable thoughts about the event, and internal and external avoidance from cues that relate to the event.
It is becoming apparent that PTSD is not only a consequence of MS but can actually exacerbate the condition. There is a growing body of evidence showing that stress may influence the immune function via the autonomic nervous system and the hypothalamus-pituitary adrenal axis.
Simply put, this suggests a worrying cycle where the diagnosis and treatment of MS can trigger PTSD, which in turn can make the physical aspects of the condition even worse.
As a result of my clinical work and my facilitation on the BelongMS app, moderating a group created specifically to guide MS 
patients struggling with PTSD and other psychological matters, I have witnessed how much critical information and mental support patients require on this issue.
PTSD in MS Patients
According to the standard classification of mental disorders, a person who experiences a threat to their physical integrity may develop post-traumatic symptoms reflected in four clusters – avoidance, hyperarousal, intrusion and alternation in mood and cognitions.
With MS, distress is more complex and intense due to the chronic nature of the disease. In most cases this is characterised by a pattern of “relapsing–remitting,” where the symptoms become worse over time (relapsing), followed by periods of less severe symptoms that do not completely cease (remitting). This pattern can make people feel helpless and incapable of controlling or planning their future, leaving them constantly anxious about what’s coming next.
Let’s take a deeper look at the four clusters of PTSD and their expression in people with MS:
- Avoidance: Symptoms of avoidance include avoiding internal and external stimuli related to the disease, such as thoughts about the disease and its consequences. Avoidance also includes re-experiencing involuntary memories and episodes of the diagnosis, or a previous relapse in an uncontrolled manner. It can also result in the patient avoiding taking their medications, or shunning places that remind them of abrasive experiences with MS.
- Hyperarousal: Hyperarousal occurs when a person’s body suddenly kicks into high alert as a result of thinking about their trauma. Even though real danger may not be present, their body acts as if it is, causing lasting stress after a traumatic event. This includes symptoms such as irritability or aggressive behaviour, self-destructive behaviours, or risk-taking.
- Intrusion: People who experience intrusive symptoms describe it as though they are right back there, reliving (re-experiencing) their trauma all over again. They are unwanted, and therefore, involuntary. Intrusion involves having nightmares about the disease (for example, dreaming about being in a wheelchair), a memory (like the day the person was diagnosed), or flashbacks to a difficult time in their journey.
- Alternation: Alternation includes symptoms related to emotional and cognitive changes, such as a negative mood, difficulty experiencing positive emotions, negative beliefs and expectations towards the world. It can also include self-blame or blaming others.
Managing MS-Related PTSD
With proper acknowledgment of the emotional complexity of dealing with MS, we can increase the patient’s involvement in, and adherence to, their treatment regimen and the development of their coping strategies. This can improve the management of their disease and significantly improve their quality of life.
PTSD has the ability to influence a person’s psyche, which can ultimately manifest into traumatic dynamics. A psychological assessment can help tailor appropriate therapies such as Prolonged Exposure (PE), Eye Movement Desensitisation and Reprocessing (EMDR) or Cognitive Processing Therapy (CPT) that can considerably alleviate symptoms.
For example, a specific type of cognitive behavioural therapy, PE, which is a strong evidence-based treatment, teaches individuals to gradually approach their trauma-related memories, feelings and situations via imaginal exposure and in-vivo exposure.
They presumably learn that trauma-related memories and cues are not dangerous and do not need to be avoided. Most people want to avoid anything that reminds them of the trauma they experienced but doing so reinforces their fear.
By facing what has been avoided, a person can decrease symptoms of PTSD by actively learning that the trauma-related memories and cues are not dangerous and do not need to be avoided – in other words, habituation.
The Future of PTSD Management in MS Patients
PTSD directed treatments such as PE are presently uncommon in the treatment of MS patients – this needs to change as we build awareness of the relationship between MS and PTSD.
Currently, there are a limited number of scientific papers on PTSD in MS patients. We need to build academic knowledge and understanding of the traumatic aspects of living with MS so that it becomes more available in the treatment of patients.
As MS is a chronic, degenerative disease, patients live with the fear of their next MS attack and the great uncertainty that goes with it. MS needs to be recognised as ongoing stress with the vulnerability of developing PTSD symptoms.
By proactively recognising and managing PTSD symptoms in MS patients, we can interrupt the stressful cycle of anxiety, coupled with its impact on the immune system to deal with flare-ups. By dealing with the effects on a patient’s health—specifically the trauma-related stress—we can help patients better manage their MS and improve their quality of life.
Dr Roy Aloni is a rehabilitation psychologist focused on treatment for adults and young patients with chronic medical conditions. Head of the Multiple Sclerosis Psychology Center at Sheba Medical Center. Dr Aloni offers his expertise on Belong.Life’s BelongMS app, moderating a group to guide MS patients struggling with PTSD or other psychological issues.
