Two Big Challenges We Face with MS
Every person with multiple sclerosis could write an article describing the biggest problems they face and, in doing so, describe most everyone else’s experience with MS, too. We’ve learned from and been validated by one another and, in so doing, have become well-informed about what MS can make of our lives. With this in mind, the following report probably won’t be news to most of you, but it might be interesting to see that what you already know and have experienced has also been studied.
Author Gary Wickman enumerated the many issues we face in his July 25, 2018 article.1 To summarize, Wickman briefly addresses family matters, men with MS, women with MS, children with MS, financial problems, employment, physical/emotional issues, social issues, and housing problems. Click here to read the article. Those of us who live with MS have touched most of these issues. For the sake of keeping this article short enough to be not-too-long, and since there are so many aspects to managing this complicated lifelong disease, let’s focus on just two for now: employment and social issues.1
Employment and MS
In a 2017 study of employment among working-age MS patients, the researchers’ goal was to illuminate the impact of multiple sclerosis (MS) and disability on employment, absenteeism, and related factors. The study was conducted by questionnaire with a cohort of 8,004 people with MS responding to survey questions. More specifically, 5,887 of them were aged 18-65; the PPMS group (344) contained a higher percentage of men who were older than average at both the survey time and at diagnosis than the RRMS group (4,829). A PPMS diagnosis along with being female, older at diagnosis, with cognitive dysfunction, fatigue, three or more disabilities, and hand function impairment were all connected with those no longer able to work. Absentee levels of both the PPMS and RRMS groups still working were the same.2
They concluded that “In MS, employment status and absenteeism are negatively affected by disability, cognitive impairment, and fatigue...These findings underscore the need for therapies that prevent disability progression and other symptoms that negatively affect productivity in persons with MS to enable them to persist in the workforce.”2
Those with MS already knew this
Those with multiple sclerosis beat the researchers to that conclusion long ago. What I think is most interesting about this study is that it will be a touchstone to revisit years down the road after new therapies are started earlier in the disease course for people with all forms of MS. Future studies will undoubtedly show that people with MS are working longer and in a more accommodating workplace, thereby delaying poverty and all the problems associated with it that can negatively impact their health and quality of life.
Social issues and MS
Dr. Julie Stachowiak’s thought-provoking 2016 article “Social Challenges of People with Multiple Sclerosis” focuses on how MS impairs social cognition.3 She cites two controlled studies that both showed MS patients, although not evidently symptomatic of cognitive decline, performed worse than controls at “recognizing facial emotions of anger and fear. The researchers theorize that this is related to dysfunction in 'executive processing' and slower information processing speed.”3
When I read this description I immediately thought of people diagnosed on the autism spectrum. What's more, we can easily think of several health conditions that might cause a struggle to connect with others. Inability to “read” people during a conversation can have a huge impact, causing tension, embarrassment, or hostility. General things such as fatigue and pain can cause distraction and a short attention span.
Ways to be better listener
Dr. Stachowiak, who also has MS, writes that such challenges firmed up her own resolve to be a better listener, work harder to focus on what a person is telling her, try harder to ignore background noise, and stop making mental shopping lists while the other person is talking.3 To read more of her thoughts and find links to other useful articles about MS, click here.
Using online resources to easy our journey
Problems with employment and social interaction are connected to many, many other issues we face on our journey with multiple sclerosis that can cause confusion, stress, and self-isolation. Online resources provide information and personal connection, two vital needs that can ease our journey with infusions of knowledge and compassion. In that spirit, I hope you will take the time to do some further reading listed in the references section below, and post your thoughts about this article.
Thank you for reading!
How many specialists did you see before finding "The One"?