Beauty is skin deep, MS is to the Bone!

This a cry for help not a story , I have lost the ability to tolerate the comment, but you look so good , when someone asks how are you , and I tell the truth! I have a lot of disabled friends (not all with MS ) who feel the same way!! When I would like to look like road kill if only not suffer as I (we) do! I avoid social situations if at all possible , unless they are disabled! I lie if I have to be with the so call normals !

So my cry out is to, politely tell people that it’s an insult not a complement to me , my looks mean nothing to me my chronic pain, fatigue , and loss of memory is all that is relevant to me ! Not awesome I showered, shaved and combed my hair !

It condescending with no understanding of what I go through, and by the way these people I speak of are not strangers , they are the people, I have wasted too much time explaining in minute detail the disease of MS & how it affects me personally and the worst is some are my health care workers ! At wits end someone please help !!!!!

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Comments

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  • Lexine Darden
    5 years ago

    I understand your feelings. It is frustrating that people do not understand. People are visual beings and get caught up on what they can see, not bothering to understand what they do not see. You do not have to justify your illness to stangers or friends. Unless they walk in our shoes they wil never fully understand. For example, I did not really understand the fears and frustrations with the inability to walk due to MS until recently I became closer to becoming a wheelchair bound person. Even though we perhaps wish it were not so, we have a deeper understanding of how ultra challenging an “invisible” chronic disease is, more than many if not most people. We justifiably get angry and frustrated with others ignorance, but we must not allow their limited perspective to be toxic to us. They, most of them, just don’t get it!

    Read my story on this site,http://multiplesclerosis.net/stories/my-ms-daring-disguise/, and http://multiplesclerosis.net/stories/a-season-of-two-gifts/. If you like you may also visit my website embracez.com for some more perspectives.

    You are not alone in this struggle with, mind, body and people who just don’t understand.

    Lexine

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