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Monday, March 21, 2016

Multiple Sclerosis: No one gets it until they get it.

Truer words were never spoken.

How do you explain the silent, often invisible symptoms of multiple sclerosis?
Family members try to understand.
Friends nod their heads in sympathy, but they really cannot do much for us.
Our doctors appear to work diligently in making us comfortable.

Handicap accessibility is offered in public scenarios.
Society goes out of its way to make public the concessions that it makes for its less than mobile members.
But no one really "gets it".

The stares, the cruel comments, the finger pointing...
No one gets it until they get it.

 Recently I was contacted by an individual who's doctor told her that she probably had multiple sclerosis. LG has had strange physical and emotional symptoms for several months and can find no answers to her persistent pain. A mutual friend told her about me and I was humbled to receiver her call.

I don't have all of the answers. In fact, I have very few. I can only share my personal experience, much of which a newly diagnosed person really doesn't need to hear.

My immediate advice for LG? Get thee to a neurologist.

I suggested a very good neuro located relatively near her. 

After our phone conversation, I sat quietly with my head bowed and prayed that my words were soothing, but I agonized over things I could have said. There are so many words, but not enough.

Symptoms of multiple sclerosis are so varied and so very, very unique to each individual. LG experiences severe restless leg syndrome (‎to point of forcing her to vacate her bed at night in fear of injuring her husband during slumber. She reported an electrical sensation in her legs and a weakness on the right side of her body. She is very emotional and her children just do not understand these weird things going on with their mother.

I do not necessarily have the same symptoms, but I do relate to her fears and frustrations.

She called me for answers. Answers I really do not have, but I hope knowing that there are other people out there who get it will give her the confidence an positive energy to move forward in her search.

I don't know about you, but I really do tire of hearing patronizing comments about my physical symptoms. I realize that it is common to react to physical/emotional handicaps with the requisite "I know how you feel" or "If there is anything I can do"; with MS, we need more. We need to commune with folks who get it. Kind words and gestures are appreciated, but are often empty.

In the words of my new pal LG: "They just don't get it."

Guess what? Neither do we.

It is difficult, if not impossible, to explain symptoms of MS when word just do not express adequately.

Multiple Sclerosis for Dummies ( a section that suggests ways to  explain pesky symptoms. Targeted to children, I find the suggestions quite appropriate for any age.

*To demonstrate MS related visual problems, smear some petroleum jelly on a pair of sunglasses to how what patchy vision looks like.
*Wearing rubber kitchen gloves to perform small motor skills like picking up a penny, button a shirt,  or unwrap a piece of candy simulates our lack of success in these situations.
*Wear ankle weights to walk around for a period of time to demonstrate the heavy leg sensation that we experience on a daily basis.
*Placing  an elastic bandage around the chest or stomach area gives a pretty good demonstration of the mysterious "MS hug".
*An elastic band wrapped around the knees or elbows can demonstrate the  spasticity (stiffness) we experience.

The National Multiple Sclerosis Society offers a plethora (I just love that word. Say it. It's fun.) of resources to assist in explaining things to children. It should be up to adults to figure things out. We really do not have time to coddle other folks while we are the one thrown into battle. Sound harsh. Is MS anythings else?  In the end, we need to take care of ourselves first. 

Multiple Sclerosis for Dummies suggests the following:
*Make good use of power naps.
*Set your priorities.
*Keep things simple.
*Do not be afraid to ask for help.
Sometimes, fatigue has the last word. If you need to lie down, invite your kids to join you for a bedtime story or a nice chat and a cuddle.(p. 265)

It is my hope that yo veterans of the MS world can provide more suggestions and/or examples of explaining MS to rest of the world. Leave your comments here to share.

If writing is not your thing, become a voyeur and scroll one of the many popular MS-related Face Book pages hosted by and full of MS warriors. It's good stuff. Ask existing members how they deal with explanations of the MonSter.
The door is always open at

Leslie Hillburn is the administrator of this group. (She also wrote the prologue to my book I Have MS. What's Your Super Power?)She will leave the light on for ya! Her side-kick Cheri Wyman is usually around as well.

Finding a kindred soul is so important in coping with MS. You might never actually come face-to-face with your new friend(s), but an unbreakable bond will form.

So, LG, I do not have all (If any) of the answers, but I am here for ya, girl. We are in this together. Sisters fighting side by side in battle; because we get it.



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