We have a chronic incurable disease.

[RoyceNewton]

This scares people they do not understand it. They expect one pill or a few shots and it will go away all over and be done with. Or they expect us to smile, shut up, and go sit quietly in the corner and die without causing them any fuss.

We live at a time where beauty money and strength are coveted. We do not show any of this, at least none that is the accepted norm. Two days ago or twenty years ago, "YOU" were a go-getter. There was a life ahead of "YOU" I am not sure what kind of life, but it has all changed. The expectations that others had of "YOU", what "YOU had of yourself are no longer valid.

This sometimes can be an immense challenge for us. Stop a moment and think about how it must be for others. Be they family or strangers. They hear ms and they have expectations and fears. I heard ms twenty years ago, got the pamphlets from the ms society and cried for days. All I saw was wheelchairs. Today I look at magazines and see happy smiling faces. I would prefer a crotchety old man sitting on a sofa. Talking to his dog. Unfortunately, this is not an image the public wants to see.

Do "YOU" see the wide range of images that we are. How can we realistically expect anybody to understand us, when we are struggling to understand ourselves.

I have this condition, not them. I choose how I react to them. I choose, it is always my choice. I can listen, smile, and ignore them, if they will not or do not understand my energy is obviously better spent elsewhere. I look good and do well because I am in a marathon against that person over there. No not them, them over there.

This is a long game, slowly learn to play it well. Do not take life seriously. Let your pain flow over and through YOU" Be like bamboo, bend, bend hard. Then bounce back, a little wiser a little stronger. the relationship that "YOU" have with yourself must come first. Be gentle it will come in time as "YOU" move along your ms journey. Take care of yourself first then if "YOU" so choose to help others understand "YOU"

Royce

I am first but you are a very close second

[carolek572 CommunityAmbassador]

Royce,

I sometimes get a confused look when I mention that I have ‘ms’. I attribute that to the lack of understanding when it comes to ‘ms’. So, either I need to do a better job of educating others about ‘ms’, or I need to be more tolerant of this ‘confusion’.

Keep Smiling,

Carole

[RoyceNewton in reply to carolek572]

both very good points

[REDLIPS44]

My friends understand, they have watched me go downhill.

[RoyceNewton in reply to REDLIPS44]

they are good friends to have

[Guava69]

Agree. Well said. The relationship with self has to come first. I'm not being selfish or self-centered. I'm learning my energy is better spent at this time focusing on self. That may change. But I'm enjoying this aspect of this MS season. I think that's one of the unintended benefits of this disease. I now have time a whole lot of time to focus on me..such a new thought/experience. I wish it wasn't this way but it is what it is. Family and friends will work out their reaction/feelings towards me. We all get one shot of this Life. I just want to play it well ☺️

[RoyceNewton in reply to Guava69]

That is the best way to look at it. One turn on the merry go round of life, I wonder. Something I truly do not know.

[La-Morena11]

Hi Royce. We have to smile and understand they just don't know about our lives with MS. I had not idea what it was when diagnosed in '99. We have to somehow figure out how to explain out complicated disease...I just say it affect our central nervous system.

[RoyceNewton]

pretty true, I generally will either not bother to explain or do it in detail. Just depends upon the recipient.

[CraigS]

Royce,

You always have such insightful thoughts. Thank you.

I am amazed by how many people I meet that know someone with MS.

I honestly don’t think I really knew anything about it until I was diagnosed. (Ignorance is bliss!)

I still find that most people don’t get it and want you to tell them that you are getting better. I have to admit that I will lie to them so they feel better.

I think it’s a difficult mind set to think someone will not heal. I keep my close friends close and my acquaintances at arms length. It just doesn’t seem like a good use of my energy to try to explain. Maybe I’m being a jerk. (Wow, that hurts)

[RoyceNewton in reply to CraigS]

no without a doubt I agree with you. I have to look after me first then others if I can