By Stacie Prada
What do I wish others knew about living with Multiple Sclerosis? I wish they knew their judgment could help or hinder us.
Everyone judges, and it’s not a bad thing. We all have opinions, hopes, fears, disappointments, appreciation, admiration, frustration, and expectations. They come through in our interactions even when trying to hide them. It’s not about the judgment, it’s about how it’s expressed. Whether that judgment comes through as cheerleading or criticizing matters.
Getting diagnosed with MS can be scary and overwhelming. Not knowing what lies on the road ahead of you can be very frustrating. MS being an unpredictable disease comes with its own set of twists and turns as symptoms can highly vary from individual to individual. Here are some things I wish people knew about MS:
- An individual with MS goes through a lot of challenges daily. Simple activities like showering, meal prep, washing dishes, etc. can seem like daunting tasks.
- MS can make one feel isolated and lonely especially if one doesn’t have a strong support system. There might be some days when fatigue is ruthless, those are the times when individuals going through MS might need someone to just listen and maybe extend a helping hand.
- The price of medications is skyrocketing every year. Many are not able to continue their treatment regimens as they find it difficult to afford them.
- Medications cannot cure the disease, just slow the progression.
I spoke with Alice, a long-time patient with secondary, progressive MS. When I asked Alice the question, “What do you wish others knew about MS?” she shared “I only have 12 spoons.” I was initially confused, but then Alice explained that these hypothetical spoons symbolize her energy in a day. These could be simple tasks to the average person, such as getting out of bed, washing your face, brushing your teeth…before you know it, three spoons have already been used for the morning. Alice says that using this analogy is a way for her friends and family to better understand her energy level throughout the day, so they can plan wisely!
La esclerosis múltiple suele ser un diagnóstico incomprendido, y muchas personas desconocen las complejidades de esta enfermedad. La resiliencia de las personas con un diagnóstico de EM nunca deja de sorprenderme. Las personas con EM tienen que aprender sobre la enfermedad y todas sus complejidades, y con frecuencia también deben educar a los que les rodean al respecto. Me gustaría que la gente supiera que las personas diagnosticadas con EM son realmente valientes y que cada experiencia es única.
Multiple sclerosis is often a misunderstood diagnosis. Many people are unaware of the complexities of the disease, and those with an MS diagnosis frequently become advocates, whether they realize it or not. The resilience of those with an MS diagnosis never ceases to amaze me. Not only do they have to learn about the disease and all its intricacies, but they often must educate those around them about it as well. I wish people knew that those with an MS diagnosis are truly courageous, and every journey is unique.
MSAA features the work of many talented artists affected by multiple sclerosis as part of our annual MSAA Art Showcase. Each month we share these artists’ inspiring stories and beautiful artwork with you as our Artist of the Month. This month, we celebrate Lisa Domenic as February’s Artist of the Month. Lisa is from Philadelphia, PA.
By Chernise Joseph
For reasons unknown, forcing myself to sit and write lately has become increasingly difficult. The stresses of life coupled with just being sick have made one of my favorite hobbies intimidating to me. How do you write what you cannot see inside your own head?
Anyway, as I sat scrolling through some mind-numbing app, an informative blurb caught my attention. It told the story of Lake Lanier, a formerly thriving African American community in Georgia that was destroyed. That, of course, isn’t a tale new to any of us who have lived in America for any length of time, but it got me thinking about Black History Month or, more importantly, Black Herstory Month.
When you are having multiple sclerosis (MS) flare-ups or are otherwise not feeling like yourself, it can be hard to find the energy to play with your kids or grandkids. But if you have committed to watching the kids, sometimes you must make the best of it.
To find out how people in the community handle those days, we reached out to the MultipleSclerosis.net Facebook page. We asked, “What are some ways to play or engage with your grandkids when you are having a rough MS day?”