#CMSC16 – Living with MS: Feeling the Invisibility of the Disease
Multiple sclerosis (MS) is a disease of the immune system for which there is currently no cure. In many cases, multiple sclerosis can be invisible to others and patients experience this invisibility themselves. In this video from The Thinking Mom Youtube channel, Effie shares what it’s like to feel invisible and what she wants others to understand about dealing with MS – even when the disease seems not really there.
“The majority of symptoms of multiple sclerosis are invisible,” Effie writes in the video text. “Fatigue, pain, cognitive issues like memory loss or trouble solving problems, weakness, blurred vision, numbness, prickly or tingling sensations, heat sensitivity, dizziness are some of the problems many MS patients face daily.”
The psychologist and mother of two also calls attention to many, seemingly endless, comments MS patients need to deal with.
“They also have to deal with people saying things like: “But you look so good”, “You are so lucky, at least you don’t have to work”, “You feel dizzy? That’s not that bad – could be worse”, “Eat healthier and you’ll get well” and “Just exercise more”.”
The Thinking Mom stresses the need for awareness about the disease and she wants others to know that invisible symptoms have huge impact on an MS patient’s life – even when those problems are difficult for family and friends to see.
Feeling that the disease is ignored and misunderstood by others can lead an MS patient to feelings of anger, frustration or fear. Patients may also experience low self-esteem, and decreased confidence. All feelings effect relationships with others.
While it is normal for MS patients to know what their individual limits are and adapt their lives to their capabilities, the disease should not lead to a diminished social life or isolation.
The topic will be explored June 3 by advanced nurse practitioner Patricia Pagnotta at the 2016 Annual Meeting of the Consortium of Multiple Sclerosis Centers ( #CMSC16 ). Called “Invisible Symptoms: Fatigue and Cognitive Dysfunction” Pagnotta’s presentation is one of dozens scheduled for the June 1 -4 meeting in National Harbor, Md.
Pagnotta has been focusing on the topic for many years. In 2014 she also addressed MS invisibility with frank discourse concerning fatigue, depression and cognitive dysfunction. According to Pagnotta, cognitive dysfunction affects 45-70% of all MS patients. It may occur early in the disease, and it is often under-recognized, underdiagnosed, misdiagnosed, and in some cases confounded by depression.
This year, Multiple Sclerosis News Today will offer expanded coverage of the 2016 Annual Meeting of the Consortium of Multiple Sclerosis Centers, June 1-4 in National Harbor, Maryland. Our five-person news team will publish feature articles on the presentations, exclusive video interviews from the convention floor with leading MS researchers and professionals, and live social media coverage and live streaming.