What if I ask too many questions about my multiple sclerosis?

One of the courses I helped teach in between overseas tours was U.S. Army Special Forces Advanced Urban Combat. While urban combat is governed by official doctrine, it is not composed of any definite rules because there are too many variables. Instead, there is a set of guiding principles that are meant to be flexible to apply to any scenario. Principles rather than rules might be the best way to approach a constantly shifting urban scenario, but they make detailed planning difficult.

They also make it difficult to answer a barrage of questions from students who like to make plans.

During one of my first classes as a junior instructor, the head of the course rescued me from such a situation. He interrupted the flood of questions and sent the students outside to set up for another run on the shoot house. Then he turned to me and said, “That happens, and when it does, if you answer more than a few questions, you might as well bring out chairs and drinks because they’ll ‘what if’ it to death.”

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If multiple sclerosis (MS) has a doctrine, I haven’t seen it. There are protocols for diagnosis and guidelines for treatment, but it doesn’t seem to have any concrete rules. Much like urban combat scenarios, MS, and life with it, are extremely variable, with no two cases being alike. This often leaves me “what-if-ing” my own scenario, and I bet I’m not the only one.

I’m not sure that there’s much of a choice involved, either. I do learn a great deal from the experiences of others with this disease, but there’s no guarantee that their experiences will be like mine. I can learn from my own experiences, but that information is always after the fact. I want to know more about the disease, what led to it, current and developing treatments for it, and remedies for the symptoms. I’ve become a student of my own illness, and I “what if” a lot.

When you have multiple sclerosis, ignorance is not bliss. My neurologist is used to me showing up for an appointment armed with a list of questions. He might sometimes wish he could send me outside to set up for another run, but once I’m in the room, he’s stuck with me. In addition to questions about my own course with the disease, I ask about recent MS news, studies I’ve read about, ongoing or upcoming clinical trials, and any nonmedical treatments currently being hyped.

I try to stop short of diagnosing myself with a symptom because there’s a reason patients shouldn’t do that. But I am guilty of asking leading questions. You can be your own advocate without being aggressive. Advocacy, including self-advocacy, comes with principles, just like urban combat. While those principles can sometimes be flexed and even bent, they exist for a reason and shouldn’t be violated.

A downside to “what-if-ing” my life with multiple sclerosis is when I ask myself the wrong questions, such as, “What if things change?” “What if I put off things until I feel better?” “What if there’s a cure right around the corner? Shouldn’t I wait until then to try to better my life?”

That all involves hope, which is a good thing. It just isn’t a component of a realistic plan — or of realistic advocacy, for that matter.

If you have MS, I believe it’s important to know as much about it as possible. The only way to do that is by asking questions. Just be careful that your search for answers doesn’t become an obsession. You can’t “what if” MS to death (I’ve tried), and obsessing over it means giving the illness priority in life. It may affect everything I do in some way, but it doesn’t get to be the most important thing in my life.

What if I try extra hard to remember 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.