With MS, I want to be my best self-advocate, not my worst self-adversary

I have a bad habit. OK, several, but I’m only going to address one of them today.

I tend to have a lot of imaginary debates or arguments in my head where I anticipate another person’s points, counterpoints, and questions to craft a perfect response. It isn’t an entirely bad habit, I suppose. After all, being prepared is a good thing, and so is being able to see an issue from someone else’s point of view. The problem arises when I anticipate an unrealistic argument, or only a worst-case scenario.

I did this long before I was diagnosed with multiple sclerosis (MS), but now it seems to happen more frequently and in two main situations: when I pretend-debate an imaginary person who is asking questions or making comments about my MS, and when I imagine a visit with my medical providers, especially my neurologist.

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Prepare for my comeback

I prepare snappy, biting responses for the random imaginary strangers who block ramps, park in the loading zone next to my van, make a condescending remark about my wheelchair, etc. These are actually very rare, but I’m ready with the right thing to say when and if they ever occur.

The problem is that I don’t prepare the perfect response for the good comments, which are thankfully much more common. Often, I’m left mumbling an uncomfortable, confused-sounding response that probably makes it seem like my mental mobility is on par with my physical.

This may explain why I like answering questions from children. I don’t imagine debates with children, so I don’t expect anything unrealistic or negative to come out of their mouths. I find it impossible to have a sharp response ready if I wasn’t expecting a sharp question.

But with medical providers — and especially a member of my neurological healthcare team — I rehearse the visit like someone preparing to defend a contentious thesis.

Like I said, being prepared is good, but I have to be careful I don’t take it too far. Asking questions, being ready to defend or justify an opinion with evidence, and even steering the conversation toward my main concerns are all part of being my own best advocate. But snatching the steering wheel because I anticipate being driven into oncoming traffic definitely fits the description of a worst-case scenario.

Both sides now

Maybe in being my own advocate, I need to remember that, in an imaginary debate, I’m the person on both sides of the argument. I have an eight-year history with my neurologist, and I may be able to predict what he might ask, but in an imaginary debate, the person I’m interacting with in my head is still me.

I also need to remember that I don’t want my doctor to just go along with everything I say. If I expect the best care, I can’t anticipate that every challenge to my perfectly crafted arguments is anything but that. If the only thing they do is nod and validate my opinions, then my providers aren’t providing anything for me short of writing prescriptions.

I still intend to be as prepared as I can for encounters with my medical providers and anybody else. That will mean readying myself to answer questions and rehearsing the evidence or experience to back up what I’m saying. But I’m also going to try to keep my expectations from being worst-case, or completely unrealistic. I don’t think I can be a very good self-advocate if I do any less than that.

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.