Even with multiple sclerosis, I still want to feel included

No one likes being volunteered against their will — especially when the person doing the volunteering uses the word “we.”

I’m sure there’s a similar phrase in every language, but in English, a common reply is, “What do you mean ‘we’? Is there a mouse in your pocket?”

I’m a big fan of properly applied sarcasm, so I’m sure I’ve used that saying many times before. Even if it were something I wanted to be included in and might even be happy to do, I still don’t like someone else making that decision for me.

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Being aware of that tends to make me recognize when I say “we,” but really mean “you” or “me.” As my multiple sclerosis (MS) has progressed, I’m painfully aware of how often I say it now. I might say the following:

“We drove to the beach.”

“What are we cooking for dinner tonight?”

“We need to remember to charge my wheelchair.”

“We should plant tomatoes in the garden.”

The list goes on, even though I know that disabilities from my MS symptoms have rendered me incapable of doing, or even meaningfully participating in, any of those things.

The wishful ‘we’

I imagine that sometimes without thinking, I use “we” when referring to things I want to be included in or feel responsible for. I’m not capable of them now, but I once was, and maybe it’s my subconscious way of holding on to that. I may have been forced to let go of things because of MS, but the “we” allows me to feel like I’m still involved.

I’ve also noticed that I don’t use that particular word when it involves something I’d rather not be part of. For instance, “we” didn’t start the IV for my last Ocrevus (ocrelizumab) infusion, and “we” didn’t insert the urinary catheter when I was hospitalized for pyelonephritis. I’ve done both of those things to other people, and I can promise you that I was involved when they were done to me. But I don’t think of them as a “we” thing. Maybe it’s not merely about something I was once capable of, but rather has to do with something I want to be included in now.

Although I can’t be sure, I think I use “we” only when referring to family and friends. Perhaps it’s not just me wanting to participate in something I once did; maybe it’s a subtle way to let people know that they’re not just serving me, and that they’re not alone in the task. I guess I feel the need to let others know I appreciate everything they do for me and that I’d do these things if I still could.

I wouldn’t wish MS on anyone, nor would I wish for anyone to have to participate in it with me. I just don’t want to be alone in this fight, and I don’t want anybody with this disease, or anyone who assists someone with it, to feel that way, either.

I think that saying “we” when it really should be “you” might be my way of doing that. Saying “you” feels a little bit like giving up, and I don’t want either of us to let go when we have so much to hold on to.

Sometimes after being sarcastically rebuked for misusing “we,” the offender might try to salvage it with another idiom. The usual one is, “There’s no ‘I’ in team.” Well, there are two of them in “multiple sclerosis,” and I’m not certain, but I think they add up to a “we.”

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.