I Get Tired of "Fake Fluff" Sometimes
Last updated: March 2018
I was diagnosed with MS on October 22, 2012. That day will forever be ingrained in my memory. Over the past five years since my initial diagnosis, I have realized how little the majority of the population knows about this very personal and intimate disease. Being an "invisible disease," it can wreak havoc on every physiologic and cognitive process within my being without anyone outside of me having a clue. If I chose to be brave and express to someone that I have MS or that I am not feeling well, I am faced with the possibility of hearing: "you just have to stay positive,' or "well, you look great," or "my friend has MS and she just ran her first half marathon."
I know that they have the best intentions and are trying to be helpful. And, please know that I think it is great that their friend with MS ran a marathon!!! However, today, I am tired. I am tired of this disease just lingering in the background and surfacing its head at anytime. I am tired of people in my life being disappointed in me when I have to cancel plans, or if I don't return a text for a few days, or if I am not floating on a cloud at all times. Believe me, I am a fun loving person by nature and usually the life of the party but some days I get tired. I am tired of wearing a mask of happiness "fake fluff" during those times that I don't feel so well. Do I do it to fit in without others knowing my secret? Do I do it to make others more comfortable? Do I do it to avoid rejection? I'm sure that all have applied on one or more occasions. LOL
WE are allowed to feel tired sometimes. With all of the things that we have to manage along with this disease (medications, doctors, labs, medications, work, fear, family, depression, anxiety, vertigo, disabilities, finances, mortgage, etc), we are entitled to have a day free of "fake fluff." Take a day for yourself. :-)
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: