Anita Williams, 53, Multiple Sclerosis
How would you explain Multiple Sclerosis to a child?
This chronic disorder of the central nervous system leads to damage in the brain and spinal cord. Multiple sclerosis is generally regarded as an autoimmune disorder where the body’s immune system attacks the myelin sheath, a coating that protects nerves running throughout the central nervous system (CNS). When this happens lesions, or scar tissue, form where the myelin is damaged. This plays havoc with the communication, specifically the nerve impulses, between the brain and spinal cord.
MS symptoms are very individualized. No person living with MS (PLeMS) is like another PLwMS. This is due to the fact that factors, such as the location of damage to the CNS and how much damage there is to the myelin sheath, determine how symptoms appear This why there can be PLwMS who rely on mobility aids and others who literally climb mountains. It is never correct or fair to compare one person living with multiple sclerosis with another. We are all doing our best to thrive with a chronic illness.
What would you want the world to know about multiple sclerosis?
Please be gracious to people living with MS. Multiple sclerosis can be mentally exhausting, physically challenging, and isolating because symptoms can pop up at any time. Symptoms vary from person to person and from day to day. Sometimes even hour to hour. PLwMS may not always be able to attend events or gatherings. Invite them anyway.
What does it feel like to live with multiple sclerosis?
Living with MS is like being on a rollercoaster every day. I can get stressed trying not to get stressed because stress is the number one thing to avoid since stress can exacerbate MS. My primary symptom lassitude which is a special kind of fatigue experienced by PLwMS. It means I am normally trying to keep up with my responsibilities because my active time is severely reduced.
Despite this problem, I have been fortunate to experience a level of success in my advocacy. This has led to a struggle with Imposter Syndrome. I often feel as if I am not doing enough or that I am pulling the wool over peoples’ eyes. It is highly uncomfortable to receive praise. It seems like they are talking about another person. MS can play mind games.
What brings you joy?
I find joy in being nice to, and helping, people. A decade or more ago I might have given myself the side-eye. However, today I find there is nothing more satisfying than providing the right resource to someone or making my mom a tasty meal. I like the idea that I might be able to bring a small spot of woohoo into someone’s life.