Faking it

I recently realized how confusing it must be to those around me who don't understand MS. I'm super open about it but few people take time to understand what having MS means. I feel my church group is confused because I work as a substitute teacher almost every day, just ran our Cub Scout program for 6 1/2 years (done for now), can work in my yard and take walks around the neighborhood, and yet if I sit for an hour I can barely walk. So after church meetings and programs it looks really bad. Sometimes I think people think I'm faking it. No one says anything, but I get a clear impression of confusion. I know I'd have questions if I saw someone like me and hadn't experienced MS myself. I guess I just feel bad no one seems to understand.

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15 Replies

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  • Be happy and content with the amount of work you do and don't worry what other people think. God knows the truth, so trust in him. What kind of ms have you been labelled with? Blessings 🦋 🌈 🍫

  • Relapsing remitting for almost 17 years now. I'm grateful I've done as well as I have.

  • That is one of the hardest parts for me. We should not care what others think but it is hard not to.

    Sorry!

  • StacyHayward

    This happens to me too. If I am sitting for even an intermediate period of time I feel like you have to wind me up for me to get going and my balance is an issue.

    I once read that Montel Williams has something similar and what he does is when he stands up he holds on, waits for a minute to collect himself and gets his balance before he starts taking a step this has been somewhat effective for me too when I remember to do it.

    I think I am more conscious of my awkward appearance than others but I do feel as if everyone must be watching me as I try to leave a meeting etc. 👀

  • I guess I could actually carry my cane but canes are so awkward! And I don't always need it so it's more convenient to stumble down the hall.

  • StacyHayward im having the cane dilemma too. I don't need it until I need it! <<shrug>>

  • Unfortunately you can't control what others think StacyHayward all you can do is educate them if they are interested.☺ And not let it bother you! Be thankful you are doing as well as you are! Hold your head up high women!😁

    Besides it's a church group, they shouldn't be judging you anyway💕

    Jes🌠

  • Waiting for my MS Awareness kits from the MS Foundation to make available at my church to help explain the MonSter to folks. I also need to find a way to explain it to my family. Don't see them often enough for them to get the full impact the MonSter has on me daily. MonSter battle for 30+ years and STILL trying to find explanations...

    In their defense, just moved closer after 30 years in Ohio (Western PA is home) so some they're just now seeing. When I turned 50, seems that all hell broke loose so it's gotten more difficult since I moved closer... Still looking for the correct balance!

  • Of course, BALANCE is just one of my biggest challenges in more ways than one...

  • My family is super supportive...sometimes overly so. But great. I don't have a lot of close friends, never been one of those people who make friends easily. But I could call on lots of people for help if I needed to do it's a good thing.

  • StacyHayward

    I scrunched my brow when I read your reply. Hard to imagine you not making friends easily.

  • You're doing great. Don't worry about what others think. People just don't want to take the time to understand.

  • I really don't like when people don't believe what you say ,if you have MSU have MS. Not everybody with the disease is wheelchair-bound or bed-bound. People can just be ignorant at times. I guess a body in motion stays in motion. Glad to hear you're doing well physically. Now get strong mentally and don't care about what others think. Big hug and keep on moving

  • I don't know how anyone who doesn't have MS could really understand MS, when I can't myself! It's a mystery. One day (or for one moment), I can seem to be functioning pretty well, and the next, I'm struggling. Some days, I need my "princess parking," as a friend with MS calls it, and others I'm walking well. No one can see pain, muscle spasms, numbness, paresthesias, etc. It's made me feel more empathy for others who suffer "invisible" diseases. I try to be understanding with people who can't seem to get it, especially since I was a nurse, but can honestly say I had so little information about MS. I've sure learned a lot since then!

  • I don't know how anyone without MS can really understand it either. It varies so much from person to person and from day to day. Since most of my symptoms are invisible, that adds to the difficulty of people 'getting it.' I'm really tired of having to explain things over and over. I also get tired of people in my life watching me trying to see 'MS' in my actions. They think I don't notice but I do.

    I love the term "princess parking"! I'm going to 'steal it'!

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