What’s sick supposed to look like?

Could someone please tell me what sick is supposed to look like. I am apparently doing it all wrong. It’s amazing how many people tell me that I look good. I don’t know whether to be grateful that they care or sad that they don’t even attempt to understand my struggle. My outside is nothing but a costume covering a body filled with chaos. I must be wearing it well.

If you could take a look at my insides, my body is screaming at me all day long. From the moment I wake up until the time I go to bed I fight a battle. Sometimes I receive blows that send me toppling to the floor. Sometimes I hurt. Sometimes I cry. And sometimes I laugh so hard that I hurt and cry all at the same time. It’s not an easy existence, that’s for sure.

I don’t think the world will ever understand what we go through from the moment we wake up until the time we go to bed. Right now I am sitting on the couch hoping for the vertigo spinning in my head to find a place of calm, for my thoughts to collect themselves, for my hands to stop trembling, for my eyesight to see the world around me clearly, and for my body to gain some strength. There must be an energy zapper in my house somewhere but I can’t seem to find it.

When you are surrounded by people who just don’t get it, don’t lose heart. At times, multiple sclerosis can be a lonely disease to deal with. I hope you know that you aren’t alone in this fight. We are all in this together.

Take any hurtful comments people have made about how you should be living with MS and toss them to the side. Unless they are living in your body they just won’t get it. Don’t hold it against them. Most of the time I don’t get MS either, and I live with it.

Hold your head high today, that’s the only thing you need to be carrying…and wear it well. I’m proud of you.

MS Gets on My NervesMS WarriorMS Superhero


16 replies
  1. bunny
    bunny says:

    hi everyone. as always penelope your words capture our feelings.
    you do have a special gift for writing and i feel so blessed to have you in my life— thank you.

    oh yeah– not being all “Booshie” as my son would say LOL can’t spell,
    but i get the ” you look great!”
    “oh girl you got it going on”, ” keep doing what your doing, your rockin’ it”.
    here’s the one i want to just scream at 😖🗣shut up!!!…. ok ready?? 🤷🏼‍♀️
    “you wear it well”! ahhhhhh followed
    “you look fantastic “!!! oh and 1 step further… ” what’s your secret?”

    ummm are you kidding me???!!!
    my standard reply is , ” oh thank you and/or that’s so nice of you to say(gag me🤮), i then wave my
    hand around my face and say
    “it’s seohora”. sarcastic hahaha.

    yes it can be very lonely 😞 with people, even your loved ones not totally understanding and getting frustrated with you.

    i print out reading materials, many from here thank you penelope and other reputable websites, for them to read to help them understand ms and me(package deal).

    but having this is a Godsend and so helpful for me as my secret “space”

    to read about others who are living with the same thing and feeling the same emotions ect…

    like you said, we are not alone- thank you 😊

  2. Clive Whiteside
    Clive Whiteside says:

    Well said Penelope this is something that most people living with MS. will have been told at some point in their life since being diagnosed.
    People often say this to you and as you look at them they often look Very Sick! Having a blurred face or even Two heads due to the issue of visual problems etc .

  3. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Thanks again Penelope we are going through a horrible mess but the world can’t really understand hat we are going through. Unless we tell them a bit of what is going on with us they will never know. It’s not a hard thing to do and at least levies us alone for a while. just think about the common saying ‘how are you?’. This could be answered by many statements like ‘Not bad’ or ‘Ok’ are the usual answers and can get through the social encounters. But if they really want to know more give it to them. You may be surprised by the result.

  4. Janet Stanzel
    Janet Stanzel says:

    Wow! Read your post and it sounded exactly like my words…I couldn’t have have said it any better. 😊
    MS really does “get on my nerves” when people don’t ask but just assume so I wear my new t-shirt proudly!😉

      • bunny
        bunny says:

        omg!! LMBO 🤣
        i have the same shirt and wear it proudly as well.
        also have the one with the zombie 🧟‍♀️ saying… the only
        good thing
        about ms is that zombies 🧟‍♂️ 🧟‍♀️
        don’t want my
        i rotate the ms tees i have and wear a different one each month when i get my treatment.
        it puts smiled 😄 on people’s faces and that’s what it’s about 🥰.
        oh i also have the super “woman” 😆 symbol one.

  5. Gale Langseth Vester
    Gale Langseth Vester says:

    I shared a link to this insightful and wonderful (and probably lots more -ful adjectives) story on FB with this comment: ‘What am I supposed to look like if I’m as pain-overcome as I am daily? Every day, all day, I should have a gauge saying how much pain I’m in — usually 9, although I do have times of day when it’s 11 — and which parts of me hurt more than the rest, if only to forcibly shut up people who seem only to want to think I’m trying to annoy them by not being able to lift one of my legs or bend one of my knees. Okay, if a gauge isn’t possible, then could I please just get smashed flat by a mallet? Please?’

    • Peggy
      Peggy says:

      So true feel same when hear that…I must be wearing it well!😄
      I know they mean well I just snipe and say thank you, even though my body is screaming otherwwise at me!
      By the way Penelope I find the ovrr the counter travel meds help with dizziness. Used be Dramamine..now called Meclizine HCI

      • Donna Nordman
        Donna Nordman says:

        Thank you Penelope for your article, “I’m doing it all wrong”. We get it!! It’s sometimes a lonely feeling having this demon but we have the love and support of our family and friends to help get us thru it! Love that shirt “MS gets on my nerves”…I’ll need to get one…true words could never be spoken. Thank you for this outlet for us all to scream with you.

  6. Maria W
    Maria W says:

    Thank you Penelope. You always are spot on with your posts. It brought tears to my eyes this morning. So nice to have others understand and nice to know we are not alone❣


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