“People just don’t know about it.”
October 22, 2012
There are two things many people say that irks those of us that have Multiple Sclerosis:
- “It’s that Jerry Lewis thing, isn’t it?”
- “But you look so good!”
No, it’s NOT that Jerry Lewis thing. Jerry Lewis represents MD—Muscular Dystrophy. MS stands for Multiple Sclerosis. Two extremely different disorders. As we MSers talk to each other, we get discouraged that MD has had a national figure representing and fundraising for them. We wish we had a national well-known person that could do the same thing for multiple sclerosis.
So many people are not aware of MS.
Nor do they understand it.
If people really understood MS, they would know not to say “But you look so good!” We would like to respond back “Thanks, but we sure don’t feel as good as we look!” Why? Because multiple sclerosis is largely an invisible disorder. People automatically associate MS with walking problems and wheelchairs.
Being a disease of the central nervous system, potentially anything controlled by the CNS can be affected: sensory functions, sight, cognitive/emotional functions—in addition to motor functions. These MS symptoms are not only invisible; they are extremely common and very disabling. Some examples include fatigue, weakness, bladder/bowel/sexual problems, numbness and tingling sensations, loss of sensation, balance/coordination issues, loss of vision, pain, dizziness, depression; the list is enormous.
Someone who understands MS would also know the detrimental effect any type of heat has on a MSer, whether it’s from the temperature, a fever, the time of day or a hot flash. Or that staggered walking is not from too many drinks, but rather from a loss of balance/coordination due to damage in the brain.
Also, since many symptoms are invisible, many people do not realize that someone may have MS. Or, because they don’t see a cane, brace, or other disability device, it is assumed that a MSer is okay. It is hurtful to get dirty looks and remarks when a “normal-looking” person with MS gets out of the car in a handicapped space; their ability to walk before their legs start to wobble may be just ten minutes or 100 steps.
So, both awareness and understanding are needed. To survive MS, we need a tremendous amount of support, not only from our friends and family, but from everybody. Physical, mental, emotional and financial support. Support for us individually due the difficulties and disabilities we live with; and support for the MS community as a whole financially–to fund research for curing MS, preventing MS, and restoring lost function due to its damaging effects.
I started an Orange Ribbon campaign recently with the Arizona Chapter of the National Multiple Sclerosis Society. We MSers and some of our friends and families have just about finished 5,500 orange ribbon pins that represent multiple sclerosis (like the pink ones that stand for breast cancer). Our goal is to have them ready for distribution at the Phoenix MS Walk on November 3rd.
We want to create more awareness, and when strangers ask us “what’s that orange ribbon for?” we will explain MS. We will be advocators and educators.
So if you see someone wearing an orange ribbon on their lapel or shirt, it means either they have MS or someone that they know has MS. We make them ourselves using orange satin floral ribbon and safety pins.
During one of our ribbon-making sessions, a woman asked “What do you say when someone asks what MS is? It is complicated and difficult to explain.” Keeping it simple and uncomplicated, I would suggest this:
What is Multiple Sclerosis?
Multiple Sclerosis is disease of the central nervous system. Potentially anything controlled by the CNS can be affected–such as motor function, sensory function, sight, or cognitive/emotional functions. Many symptoms are invisible, so many people don’t know someone has MS. (Examples: fatigue, weakness, bladder problems, numbness/tingling, pain…)
It is not fatal, contagious, or congenital. There is no cure; the cause is unknown. It is generally progressive. The majority of persons afflicted will become disabled during the decades of their lifetime with no way to fix the damage.
Every case of MS is different, unpredictable, and very uncontrollable. It is unknown what course the disease will take, what will be affected, how quickly it will happen, and how much disability will occur.
There are new drugs that are trying to slow the progression, and meds to help relieve symptoms and shorten relapses. Nothing is available yet to prevent MS or restore lost functions resulting from its damaging effects. However, there are many things one can learn to manage living with it.
We at the Arizona Chapter of the NMSS are starting to hand out copies of this brief description of MS to people we meet that do not know about multiple sclerosis. We are going to encourage other MS groups and organizations to do the same.
We need help, and we certainly need a cure.