The Mental Impact of Sjögren’s Syndrome

The hallmark of Sjögren’s Syndrome is its effect on exocrine glands including tear and salivary glands. Central Nervous System effects are controversial and are considered uncommon.  However, several small studies demonstrate the mental impact of Sjögren’s Syndrome. This spectrum of the mental impact can vary from coping with a chronic medical illness to clinical depression, anxiety or cognitive effects.

Coping with Chronic Medical Illness

Most if not all medical illnesses are associated with some impact on emotion or mood.  There are several theories about healthy coping and about acceptance leading to healthy coping.  According to Elizabeth Kubler-Ross who wrote about acceptance in the context of grief and loss, there are 5 stages eventually leading up to acceptance:  Denial, Anger, Despair, Negotiating and Acceptance.  These stages can result in different psychological outcomes.  For example in Denial, there is an initial resistance to accept the diagnosis, which can lead to lack of compliance with treatment strategies.  This in turn can exacerbate medical symptoms, leading to frustration and despair.  As the diagnosis becomes more and more an inevitable part of life, Anger may set in, which can result in mood disturbances and may be noticeable in personal relationships.  Despair and sadness often correlate with the beginning stages of acceptance and may be associated with feelings of loss – losses incurred by the medical illness.  For example in Sjögren’s Syndrome, patients often talk about loss of being as physically, socially or occupationally active compared to before their diagnosis.  They sometimes feel that they must depend on medications and various cumbersome strategies to combat sicca symptoms on a frequent and daily basis.  This can also be perceived as a loss of independence.

Healthy coping mechanisms can mitigate the negative psychological impact of chronic medical illness.  Some coping mechanisms are maladaptive, and do not serve us well.  Coping mechanisms are unconscious and reflexive, but if we make ourselves aware of them, we can make conscious efforts to change how we cope in order to improve the emotional outcome:  Here is a list of some that work and some that do not:

Maladaptive Coping Mechanisms (what doesn’t work well)

  • Confrontative coping
  • Hostile or aggressive efforts to alter a situation
  • Distancing
  • Attempting to detach oneself mentally from a situation
  • Using escape-avoidance
  • Efforts to escape or avoid the problem or situation

Adaptive Coping Mechanisms (what does work well)

  • Seeking social support or information from others
  • Planful problem-solving
  • Conducting Positive reappraisal
  • Self controlling
  • Attempting to regulate one’s feelings or actions
  • Accepting responsibility for managing the illness – e.g. following treatment strategies, attending medical appointments

Positively re-appraising a situation means to attempt to deliberately perceive it in a way that leads to more positive action.  Lipowski wrote about coping with chronic medical illness by identifying perceptions of illness.  If, for example, we perceive illness as a punishment, this is likely to lead to feelings of despair, low self worth, hopelessness and nihilism.  If on the other hand we perceive illness as a challenge, it leads to feelings of wanting to rise above it, to take control and do whatever is necessary to manage it so we can move on with our regular activities as much as possible.

Here are some examples of healthy versus unhealthy responses to illness:

Healthy Response to Illness:  Challenge, Strategy, Value

Unhealthy Response to Illness:  Enemy, Punishment, Weakness, Relief from responsibility, Irreparable loss or damage

*next month we’ll look at the Psychiatric Effects of Sjögren’s Syndrome – Depression and Anxiety

*Article taken from SjSC “Connections” Newsletter, Volume 5, Issue 1