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!

MS fatigue is different from the average tiredness someone may have. Alice describes it as an “all-encompassing fatigue.” With MS, sometimes things are going on the inside that others cannot see; the pain is not visible. Alice shares that she wishes others knew that MS shows differently for everyone and that just because you may look okay on the outside, there may be an attack on the inside.

Alice once loved to play piano, tennis with her friends, and cooking for her family. Although these hobbies are something she can no longer do the same, she makes the most out of what she can do. Alice now acts as her son Jacob’s sous-chef and admires his love for cooking. She is motivated to engage in her community through church, pottery classes, and helping others as a licensed professional counselor. She appreciates the little moments that once were a chore, such as going to the grocery store.

It is important to understand that MS can present itself differently. It can be easy to assume that someone may be having a good day, when really, we can never truly know what is going on internally. “Even though some days are mentally and physically harder than others, I still have hope each day,” Alice says.