Did you know that 3 out of 5 pwMS self-report being lonely? Why?
The following study explores the possible causes of loneliness.
As you know MS is a very stigmatizing disease that given sufficient time, at least in the preDMT era, causes most pwMS to become disabled. Associated with the disability is well-documented unemployment, the breakdown in personal relationships, depression, anxiety, cognitive impairment, fatigue and loss of quality of life. As a result of these impacts of MS, pwMS become socially isolated and lonely.
This study below confirms these facts and shows that loneliness can be explained by employment status, marital status, upper extremity function (#ThinkHand), social disability (#ThinkSoical) and physical disability. Not surprising other correlates included depression, cognitive fatigue (#ThinkCognition), psychosocial fatigue and quality of life.
What we now need to do is learn from this and do something about it. That is why we are trying to set-up a programme of local MS wellness champions to try and tackle this problem. In fact, I am meeting with Alyson McGregor, the National Director of ‘Altogether Better‘, this afternoon to ask her to help us with our social capital project. I am sure we can model our #PatientActivation programme on their ‘Altogether Better Health Champions‘ model and achieve similar outcomes.
I said yesterday I provisionally called the programme ‘Teaching MSers how to Fish’. This title is based on the teachings of Lao Tzu, the Chinese philosopher and founder of Taoism, who said “Give a man a fish and you feed him for a day. Teach him how to fish and you feed him for a lifetime”.
Balto et al. Loneliness in Multiple Sclerosis: Possible Antecedents and Correlates. Rehabil Nurs. 2019 Jan/Feb;44(1):52-59.
DESIGN: Cross-sectional, comparative study of MS (n = 63) and healthy adults (n = 21).
METHODS: Data were collected using self-reports of loneliness and antecedents and correlates and analyzed using inferential statistics.
FINDINGS: Those with MS had significantly higher loneliness scores than healthy adults (p < .05), and this was explained by employment status. Possible antecedents included marital status (p < .05), upper extremity function (r= -.28, p < .03), social disability frequency (r= -.49, p < .00), social disability limitations (r= -.38, p < .00), and personal disability limitations (r= -.29, p < .03). Social disability frequency (beta = -.41, p < .001) and marital status (beta = -.23, p < .046) accounted for 25% of the variance in loneliness scores. Possible correlates included depression (r= .49, p < .00), cognitive fatigue (r= .34, p < .01), psychosocial fatigue (r= .30, p < .02), and psychological quality of life (r= .44, p < .00).
CONCLUSIONS: We provide evidence of loneliness in persons with MS, and this is associated with possible antecedents (e.g., marital status and disability limitations) and correlates (e.g., depression and fatigue).
CLINICAL RELEVANCE: Loneliness should be recognized clinically as an important concomitant of MS.
I am aware the killjoys reading this post will poo-poo these ideas, but before doing this please think about what it must be like to wake each day alone, and possibly disabled, and to go to bed each night alone, knowing that tomorrow is likely to be a repeat of today.
Balto et al. Loneliness in Multiple Sclerosis: Possible Antecedents and Correlates. Rehabil Nurs. 2019 Jan/Feb;44(1):52-59.
PURPOSE: The prevalence and possible antecedents and correlates of loneliness in multiple sclerosis (MS) was examined.
DESIGN: Cross-sectional, comparative study of MS (n = 63) and healthy adults (n = 21).
METHODS: Data were collected using self-reports of loneliness and antecedents and correlates and analyzed using inferential statistics.
FINDINGS: Those with MS had significantly higher loneliness scores than healthy adults (p < .05), and this was explained by employment status. Possible antecedents included marital status (p < .05), upper extremity function (r= -.28, p < .03), social disability frequency (r= -.49, p < .00), social disability limitations (r= -.38, p < .00), and personal disability limitations (r= -.29, p < .03). Social disability frequency (beta = -.41, p < .001) and marital status (beta = -.23, p < .046) accounted for 25% of the variance in loneliness scores. Possible correlates included depression (r= .49, p < .00), cognitive fatigue (r= .34, p < .01), psychosocial fatigue (r= .30, p < .02), and psychological quality of life (r= .44, p < .00).
CONCLUSIONS: We provide evidence of loneliness in persons with MS, and this is associated with possible antecedents (e.g., marital status and disability limitations) and correlates (e.g., depression and fatigue).
CLINICAL RELEVANCE: Loneliness should be recognized clinically as an important concomitant of MS.
What is the number of number of people in the general population reporting loneliness? To compare this to pwMS.I ask this as family members and friends who do not have MS have told me they were/ still are lonely (before I got MS). I think loneliness is fairly common in the general population. You can be in a marriage with a partner and have children and feel lonely, but you are not necessarily 'alone'.
Loneliness is not black&white, i.e. you are not lonely or not lonely. It is a gray scale. All I can say that when you measure loneliness using for example UCLA Loneliness Scale, which is what was used in this study, pwMS scored worse than controls.
I think one of the problems with MS is that you change, become a different person. It is quite subtle but very profound. It is like the tracks of a railway line diverging. The relationship does not founder because of infidelity but the person with MS becomes a different person and this leads to loneliness and a feeling of being isolated.
Add to the divergence other MS associated problems such as loss of job, self esteem, status and cognition then it is no surprise to see the issues you document