Living with Multiple Sclerosis
"But you look so good!"
When people say this to a person with MS (multiple sclerosis), they may be trying to compliment the person with MS, but this statement is an example of how MS may be misunderstood by the general public. MS is about much more than visible neurological signs, such as weakness and trouble walking; MS is about invisible symptoms, such as pain, trouble thinking and fear of the unexpected.
"Is MS the same as 'Jerry's kids'?"
Jerry's Kids refers to the Jerry Lewis telethon for the Muscular Dystrophy Association (MDA). MS is not a muscle disease at all, and instead "sclerosis" refers to potential "scarring" on the brain, optic nerves and spinal cord. MS is "multiple" because it is characterized by neurological signs and symptoms separated in time and space (not simply in one part of nervous system). The "multiple" aspect of MS is exactly why people with MS may have a variety of different symptoms. Each person with MS lives through a unique set of experiences, and while one person with MS may have problems walking, another person may have no outwardly visible signs, but have trouble with visual blurring.
"You have MS? My house is a mess too"
A patient at one of Neurologique's MS Town Hall Meetings told me about this seemingly humorous quote that her best friend said to her when she told her about her new diagnosis. Aside from demonstrating her friend's lack of understanding about what it means to live with MS, this quote highlights that it is often difficult for an outsider to recognize that someone has MS. This is why it is so important to educate the Public about what it means to live with MS.
MS is a lifetime diagnosis, where the body's own immune system attacks the nerves and the white matter covering the nerves (myelin). This means that living with MS means living with the potential for different neurological symptoms. Living with MS does not mean that you necessarily have to change how you live your life, but some people may need to make adjustments. The majority of people with MS live their whole life without even knowing that they had MS – this is how mild MS can be. For others, MS symptoms may be a slight annoyance, without slowing them down, while for others MS symptoms may be a focal point of their daily lives.
It is important to remember, however, that MS is just part of one's life, and a person with MS has MS... MS doesn't have them. MS is a lifetime diagnosis, not a lifelong disease (this makes life sound long and arduous). MS, a lifetime diagnosis, like the cable station with a similar name, continues even when you aren't focusing on it (watching the TV) and even when you aren't having symptoms (watching the TV), you still have to stick to the treatment plan (pay the cable bills).
Living with MS does not need to mean living with disability. Living with MS may mean living with uncertainty, but it also means living with the hope of all the new and emerging treatment options.