Being honest with myself about MS pain isn’t the easiest thing to do

Over the years, I haven’t always followed the same advice I’ve given others. For instance, when I was in the military, I’d tell soldiers preparing for a Veterans Affairs examination that it wasn’t the time to act tough — they should report their pain honestly and accurately. This initial exam sets the stage for future care, and in all cases — but especially this one — honesty is the best policy.

When it was my turn, I remember the examiner stopping a range of motion assessment and saying, “I know your knee hasn’t always made this crunching sound, and I can see you gritting your teeth. Let’s try again, and this time, don’t wait until you can’t stand the pain. Tell me the instant you feel discomfort.”

You might think I learned my lesson then, but you’d be wrong. Not long ago, while checking in for an exam with my neurologist for multiple sclerosis (MS), I was asked to rate my pain from one to 10. When I said it was just the usual amount, the nurse reminded me that “usual” should be zero, and my chart showed it wasn’t.

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Psychological and physical factors

Looking back, I don’t think I was being intentionally dishonest. I’m well aware of the pain directly caused or aggravated by my MS, and I’m not deliberately downplaying it. I’ve been seeing the same team for nearly eight years, so we’re long past the point of me trying to appear tough. Instead, I think I’m not giving MS pain its due consideration because of a mix of physical and psychological factors.

If I didn’t have MS, I doubt my pain threshold or tolerance would be any higher than average. What I do have is dulled sensation in various parts of my body, thanks to MS. That numbness — a common MS symptom — might explain why it sometimes seems like I’m ignoring chronic pain. I’m fairly sure it’s why I missed the painful clues of a urinary tract infection before it went septic. I certainly wasn’t trying to tough it out — I just didn’t feel it coming.

Psychologically, I’m prone to dismiss pain I’ve had for longer than a few weeks. It’s there — if I focus, I’m aware of it — but if it’s something I’ve dealt with for years, I tend to push it into the background. I deal with chronic pain much like tuning out a constant, annoying sound or going nose blind to a familiar odor.

I also fear not being believed or taken seriously if I report pain higher than a five. I’m still sometimes hesitant with my MS team, though we’ve built trust over the years. With unfamiliar providers or in acute care, my guard goes up again. I know I should be past this, but I still downplay pain if I worry a provider might wonder why I’m not rolling on the floor. The fear of being seen as an unreliable witness to my own condition is strong enough to make me minimize my symptoms.

Deep down, I know that being completely honest with healthcare providers, including about any hurdles MS puts in my way, leads to the best care. Psychologically, I realize I also need to be honest with myself. If I claim to be my own best advocate, then I need to be truthful with my advocate. I’m getting better at it, but there’s still room for improvement.

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.