Having a chronic illness like MS can be difficult enough, but add to it the tendency to isolate oneself from others, and the burden can become overwhelming. There are various reasons for isolating behavior:
Shame stemming from physical impairments
This affects patients in different ways, depending on levels of outward disabilities. MS patients who can pass as “healthy” people may become panicky about being around others who do not know about their disease. Disclosure is not as necessary until an MSer who looks fine proves otherwise. Vague abnormalities may give someone away: a limp, an unsteady gait, muscle twitches, excessive bathroom usage, sudden exhaustion, and so on. Those with greater outward disabilities have their own issues of being strong in the face of public ignorance and dismissal. Living with these questionable imperfections can take a toll on a person who is tired of explaining multiple sclerosis to others. Sometimes avoiding others outside of an immediate circle is easier.
Not feeling understood by the general population
Let’s face it: MS is weird, sometimes frightening, messy, and not well-understood by most people. I didn’t know much about it myself until I contracted it. People with multiple sclerosis need to feel understood for their limitations, outward symptoms, hidden illness, and their tendency towards anxiety and depression. Family and close friends can often be counted on to be understanding, but what about the rest of the world? The grocery store clerk doesn’t know why Mary is so slow taking her change when the line behind her is piling up. Office mates might not understand that when Jim needs to go to the bathroom, it’s often an emergency. How do people with multiple sclerosis deal with these unknowing folks? Holing up and avoiding others can be a solution.
Lack of MS resources, community activities, and Society support
Not everyone lives near a local MS Society chapter and can get involved with planned activities, use resources, or meet others with multiple sclerosis. Physical isolation is more common than people think. In my state there are 3 MS society chapters, all in the central and northern regions. The southern region, which accounts for 1/3 of the state, has no representation. I live about 35 minutes from my closest chapter, but I wonder what other MS patients down in south Jersey do to feel connected to the multiple sclerosis community?
Physical isolation due to disability
The reasons for this can be various: physical inability to leave the home (unaided), public places that are not wheelchair- or scooter-accessible, lack of a social network due to being out of the workforce or living away from family and friends, moderate to severe fatigue, debilitating depression, and so on. This can be the most heartbreaking cause for MS isolation. Multiple sclerosis can physically flatten a person and make it extremely difficult to get out. The social isolation stems from being at home and not having a good support network. And depression can physically flatten just as surely as any other MS symptom.
****My next MS article, “Multiple Sclerosis and Avoiding Isolation”, will discuss ideas for widening the community circle. In the meantime, find more MS articles, information, and stories in the “Categories” and “Blogroll” to the right.
