A Bit of an MS Vent
Last updated: June 2022
I've read articles that talk about what people should not say to someone with multiple sclerosis. I always agree. I also understand they may not mean it, or even recognize that it can be construed as offensive, hurtful, or frustrating to hear.
Comments about MS
"But, you look so good" (As opposed to what? Having MS should make you look bad?). "I know how you feel" (Hmmm...). "I'm tired too...Gonna turn in early" (Fatigue does not equal tired). More often than not, I really don't mind actually, but recently, I was told something that brought me pause. Let me set the stage:
The challenges of parenting
I am a mother of two. I am not perfect, but I guide, mentor, teach, love, and always try to provide the balance to be present, yet stand aside as much as I can to allow the development of autonomy and independence.
I want to protect them from all the ills life can/may and, more than likely, will bring their way. I want to stop them or intercede with my opinion when they make choices I wouldn't necessarily make because I feel that I know better since I've been around for half a century compared to their less-than-three decades. And I want to only be their parent and them only my children as opposed to sharing our roles with charge and caregivers due to SPMS, but I cannot - to any of these examples. And it's all challenging to contend with.
The emotional impact of missing events
I've lost two uncles and an aunt and was unable to attend their funerals. The first, due to the impact of COVID-19 and having to be extremely cautious because of my compromised immune system. Although I could have braved it if perhaps I could transfer into a car or rough the expense of a handicapped-accessible van on a limited income. This example, and others of the like, are difficult to deal with emotionally.
Relying on others for daily tasks
I can no longer drive, work, cook, clean, walk, go to church, dress myself, go on trips, or groom without assistance. I am pretty much dependent on someone for all regular daily activities. And no matter how hard, I must deal daily with these unsettling facts.
Those are some aspects of my personal life - all heavily laden with the very negative effects and impact of this daily, ever-present, chronic debilitating disease chipping away at all parts of my life. Having a conversation about things I could write about, I advised that I am content writing articles regarding current events for the local newspapers sometimes and poetry about life, but primarily, reflections and experiences about my life with MS. The response was "MS is not your only personal drama!"
Intertwined and impactful
Now, I would never, could never be delusional enough to believe that my personal life without MS would only feature the dramas of the outside world such as political, worldly, and societal adversities. However, it is SO intertwined in my life that I found myself thinking, 'perhaps you could have kept that to yourself'. Because it isn't that it's my only personal drama, but so much has MS at the foundation of it. I have to base so much of my present and future plans due to its effects on me as a whole, it truly feels like my only personal drama - and one I hate so very much, to be honest.
The statement, I'm certain, wasn't meant to be facetious, but it definitely brought me pause, and I just thought I'd share a 'what not to say' from my perspective.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: