Why I disagree with the phrase: “I have MS, MS Doesn’t Have Me”

From early on in my diagnosis I kept hearing the phrase: “I have MS, MS Doesn’t Have Me.”  It can be a very powerful phrase for people and can be used to remind them that MS does not run their life.  Ideally, it empowers people to overcome their illness.  The phrase is used all over the patient advocacy world.  Personally, I completely disagree with it!

While I don’t want MS to take over my life, if I allow it to provide some guidance and direction for my life, it might actually help me.  In other words, I increase my chances of staying healthy by actually listening to what MS has to say and sometimes letting it “have me.”  In many ways, MS does have me.  It dictates my sleep schedule and my workout schedule.  My efficiency at work, and certainly my efficiency when I was in school.  Here’s the best part though: When I listen to it, I get what I want!

Fight MSIf I indulge the desire of my MS to go to sleep early, I get much more done the next day!  If I start having symptoms, for example pain or numbness in my limbs, I try not to push past it.  I have a choice.  I can either say “I don’t want to let this disease interrupt my life so I’m still going to work today,” or I can say “my body is telling me to rest today and I’m going to do that so I can feel well enough to work the rest of the week.”  I am certainly not going to lie to you and tell you I always opt for the latter.  I need to pay my bills and I can be pretty stubborn.  I spent many years of my life just pushing through things.  But this illness has certainly taught me that if I don’t listen to it and don’t let it make some decisions, then it will only punish me.

There can always be a middle ground of course.  For example, last week I woke up and my right hand was throbbing.  I called my acupuncturist, Hal Krevoy, on the way to work and scheduled a session for that evening right after work.  I made a compromise with my body – if I was going to still push through it and go to work then I would go to acupuncture to provide some rejuvenation and in so doing, honor my body’s message to me.

MS Sorcerer's ApprenticeListen, I’m not knocking a phrase that many people hold dear.  But I don’t personally find it uplifting.  When I was in high school, I gave a speech once in Orlando, Florida to a room with a few hundred individuals who were the top MS Society fundraisers from across the country.  Wearing my Mickey Mouse wizard hat (yes, you can laugh), I announced to them that my personal motto is:  I don’t have MS, MS has me to put up with!  Yes, I do face this illness, but I am going to do everything in my power to make sure it does not win.  To make sure that it does not ruin my life.  Ironically though, in order to ensure that it does not ruin my life, I have to at least let it provide input.  I want my body’s notes on how to spend my weekend or what type of trip to plan, or even what kind of job I should have.  The more I listen, the more I can really show “it” who’s boss!  Taking direction from time to time allows me to remain in control and successfully accomplish the things I want.

I never want to give MS the chance to rear its ugly head so I work hard to keep it subdued.  A boxer cannot fight effectively if he does not rejuvenate between hits or conserve energy throughout the fight.  More importantly, a boxer will never win a match if he shows up to a fight exhausted and malnourished.  I have to give my body what it needs in order to be a strong fighter and ultimately be victorious.  Despite this disease I intend to keep living a full life and follow my passions for many many years to come.  To survive the marathon, I need make sure that MS knows I’m a worthy opponent, that “it” has me to put up with and not the other way around!

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