A Bit of an MS Vent

By Dianne Scott

3 min read

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.

MS drama

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.

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Kim Dolce Moderator & Contributor
I totally feel you, Dianne. I also feel that the response "MS in is not your only personal drama" comes off as a lecture, telling you what place MS has in your life. I find that off-putting, and would never say that to anyone. Instead, I think it is more appropriate--and more empathetic--to ask a person what place MS has in their lives. Asking, not telling--is something our health care team, loved ones, and everyone else we interact with should be doing. Our culture is saturated with health and wellness information, and we tend to be prescriptive with each other rather than stepping back and listening to people. We know our bodies best--that is a mantra of the chronic illness community that we wish our medical team would respect, at the very least. Thank you for venting about this. It is one more example of the challenges we face to be heard and understood. --Kim
Therry Neilsen Moderator & Contributor
Dianne, this one hit me like a wet backpack. I am so sorry you had to listen to that. Sending you a hug and a hope for a better day with more humane interactions. --Therry
Mike Russell Moderator & Contributor
Hello Dianne I enjoyed reading your story and know how you feel dealing with all that you do and still making a difference in other's lives. It's tough to hear those words "MS is not your only personal drama" when MS changes our life every minute of every day. Some folks just have not a clue how MS impacts our bodies nor a clue what not to say. As stated before, "if they walked a day in my shoes" they might know. I am a PPMSer and always hear "you look so healthy" which is good my effort has helped although they have no clue how I feel!
Lisa Emrich Moderator & Contributor
Dianne, I'm so glad that you shared this. It is definitely presumptuous for other's to basically accuse you of using MS as the reason for any challenges in life. So much of life is intertwined that it would be impossible to put each element in a little box. I agree with Kim that more asking and less telling is something that we need in general to gain understanding and express empathy. Thinking of you. --Lisa
f5hwo4 Member
My husband said something similar to me last year. He was wanting to do go somewhere and I told him that I didn't think I could handle that much walking. He blurted out that I always have a excuse with my MS. I told him that when it came to walking I definitely have a excuse. He backed down and said you have a good MS excuse this time but not always. I think he was just frustrated, partly my fault I married the baby of the family. I was the responsible middle child and getting my way wasn't even in my vocabulary. Potter
Debbie Petrina Moderator
I can relate because my husband had told me in the past that I used MS as an excuse. I think they blurt that out because it's an immediate response of anger that their lives are interfered with; they blame us instead of accepting the truth that MS is clearly a valid reason and not an excuse. It's so hard not to take it personally but I learned through therapy how to deal with it. My hubby is also the baby of the family, and how they are raised definately can influence their behavior. The funny thing is that now that we are much older, HE uses MS as an excuse when he doesn't want to do something! lol Best, Debbie (Team Member)
yoshitail9 Member
Dianne...what did that Bunny Mommy say to her little one..."If you don't have anything nice to say....Then keep your trap shut". 🐇How insensitive some people(🐀)can be without considering other peoples feelings.
wandaholt Member
Dianne, I very much know how you feel. Recently a good friend responded to my conversation about my MS by saying "MS is not you,not who you are". I was hurt and felt lonely because I realized she can never understand. Only those of us struggling w MS 24/7 really do. God bless.
Mememe Member
I have one living relative- my sister. When I told her that I had been diagnosed with MS, her reaction was "Having MS is no big deal. My friend's husband has it and he goes to work every day." When I told her that I had to give myself shots (I have had a life-long fear of shots and the possibility of liver damage that goes along with Rebif played into that fear) her only reaction was "So what. I have to give my husband allergy shots every day. Just get over it." And now, she cannot understand why I avoid her company. 
1. Lori Foster Member
 That breaks my heart, <inline-mention username="Mememe" user-id="4250559"/>. I wish your sister was more compassionate and understanding. Some people just can't comprehend that the MS journey is different for everyone. I hope she comes around over time. Please know we are here for you whenever you need support or a place to vent. Thinking of you. - Lori (Team Member)