Explaining Multiple Sclerosis to Those Close to You

  • Multiple Sclerosis is a mysterious disease for many. The exact cause is still unknown although there are some autoimmune theories. The progression of the disease is unknown for each individual patient, especially for those newly-diagnosed.

     

    No two MS patients are exactly alike so we are told and continue to tell each other regularly. So true. What happens to one patient does not happen to all patients. The impact of MS on your life is unknown at the time of diagnosis and is sometimes changes within the very same day.

     

    Multiple Sclerosis can have a profound impact on your relationships and sense of security which can certainly create overwhelming uncertainty. A fear that I've run into several times is what effect MS will have on my financial security, one which I failed to realize so strongly when I was first diagnosed.

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    So with all of the mystery, the vast unknowns, and the looming fears, multiple sclerosis remains a disease not well understood by those unaffected and not well represented by those affected.

     

    "You don't get MS until you get MS," so the saying goes.

     

    So who do you tell?

     

    Start with your Inner Realm of those closest to you: your immediate family members, your fiance, your other doctors, a trusted friend perhaps?  But pause there for now.

     

    When do you tell?

     

    Maybe you want to wait until after the diagnosis is confirmed. Tell your other doctors at the next visit when you discuss any changes since our last visit? For children, certainly when you feel they can understand without too much fear. Check out Keep S-Myelin produced by the National Multiple Sclerosis Society to help children learn about MS.

     

    But most importantly - WHEN YOU ARE READY!!!!

     

    Why should you tell?

     

    As humans, we each have a deep need to be known, to be liked and to be loved for who we really are.....a need often not satisfied. The ability to be yourself, to be genuine, to be unguarded and not to have to play a role is one of the most treasured gifts you can award yourself.

     

    When one family member has MS, the family lives with MS. Engaging members of the family in sharing household burdens is an absolute must, ie. children can take more responsibility for laundry or preparing food.

     

    An appreciation of the physical and emotional issues which the MS patient may be experiencing is necessary in approaching this disease together. Having a trusted friend who knows about your MS can be essential. A support group of people who share similar concerns, or peer counselors (kinda like some of the friendly folk around here) can provide relief, understand, and direction.

     

    Who do you tell? When and Why?

    Part 1 - The Inner Realm

    Part 2 - The Middle Realm

    Part 3 - The Outer Realm

     

    Lisa Emrich is author of the blog Brass and Ivory: Life with MS and RA and founder of the Carnival of MS Bloggers.

Published On: August 15, 2008