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The Mythology of the MS Community

Posted Jan 29 2010 1:26pm

What does the MS community believe is possible for you? How are the beliefs of our community limiting us and our ability to get well? How are they helping?

Yesterday I wrote about your personal mythologythe set of stories and beliefs you tell yourself about your life. If you have a self-limiting mythologywhat you deem possible for yourself will be limited as well. But this isn’t just true for individuals – groups and organizationscountries and concepts have mythologies as well. So what’s the mythology of the MS community? And how is it shaping our reality? First let’s look at who our community consists of.

The MS community consists of the doctors and health care workers who care for MS patientsthose who have been diagnosed with MSthe pharmaceutical companies that manufacture the drugs to treat MSthe health insurance companiesthe MS organizations and support groupsand friends and family of those with MS. And collectivelythese people have all contributed to the MS mythology.

It matters because whether you realize it or not – and most people don’t – you are being directly influenced and effected by this set of beliefs about what MS is and what is possible for those who have it. Yesterday I talked about how your storyif it’s self-limitingis like a building with concrete walls and low-imposing ceilings. Well the MS community has already erected its walls and it’s low-imposing ceilings – you just happened to have found yourself in this room. But most people can’t see the walls – they don’t even know they’re there. But the good news isonce we can see themwe can knock them down.

Here are some of the ones I’ve noticed. This list is incomplete and I welcome you to share with me the ones you’ve noticed as well.

I have MS but MS doesn’t have me: This is my favorite because it’s the only empowering message I’ve heard from the community. It suggests a prevailing desire to get well on the part of the person with MSand an unwillingness to succumb. It implies that your MS diagnosis is not your identity. It suggests possibility. Unfortunatelythe majority of the stories we’re telling ourselves about MS are in direct contrast to this oneso the impact of this message is weak – it’s like a soft-spoken singer trying to be heard amidst a resounding chorus.

MS is Incurable: This is one of the most powerful and dangerously self-limiting stories upheld by the MS community and beyond. The truth is there are people with MS who have stopped the disease process and are asymptomaticand I’m not talking about people with “benign MS”. These are people who were in the grips of the illnessbut who were willing to educate themselves beyond western medicine and make the lifestyle changes necessary to get well. Can MS be “cured?” I don’t know. What I know is that certain lifestyle choices can create the environment in the body in which healing is possiblesymptoms no longer occurand disease progression has stopped.

Telling ourselves that MS is incurable is simply not a useful story. It sets up a reality in which we are helpless. Howeverwe know that terminal cancers have miraculously disappeared. We can point to people with MS who made choices that led to their symptoms fading away. Anything is possibleand believing thisin and of itselfis a healing belief. Believing that it’s possible provokes action in the direction of wellness. What did the people do who got well? How can I change and add to what I’m doing so that I can get well too? These are the thoughts that come from believing. If you want to understand how the mythology of the MS community affects yousit for a minutequiet your mindand say to yourself: MS is incurable. Feel how that feels in your body. Now say: It is possible to stop the disease activity and progression of MS and become asymptomatic. How does that one feel?

Imagine an MS community in which this were the prevailing truth. How would it change people’s lives?

Here are some of the other major stories I’ve noticed. I would love to hear from you if you can think of othersand I’d love to know how the mythology of the MS community makes you feel.

  • MS strikes us down in our prime
  • We’ll get worse and worse as time goes on
  • Chances are we’ll end up in a wheelchair
  • We should all pray someone comes up with a curebecause there are no other options
  • MS symptoms can sorta be managed with strong pharmaceutical drugs that have lots of side effects
  • Shooting ourselves in the side with a needle a few times a week is the only thing standing between us and severe disability
  • The MS drugs are keeping us well
  • Our future is uncertain
  • Our neurologists know best

I’ll be writing more in the future on the stories our community tells itself (and we individually tell ourselves as a result).

If we were to rewrite this mythology to support our healingwhat stories would we be telling ourselves instead?

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