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World MS Day: What’s One Thing You Wish People Knew About MS?

May 30, 2019, marks World MS Day, an opportunity for the global community to come together, share stories, and increase awareness about what living with MS is really like. In order to better capture the intricacies of living with MS, this year we asked our advocates what’s the one thing they wish people knew about MS. Their honest, heartfelt responses reveal the depths of daily life with MS. Keep reading to see what they had to say.

World MS Day Magnet Giveaway – Now Closed

We are also doing a GIVEAWAY! We are giving away this magnet below with custom artwork from our very own advocate Brooke. This magnet was inspired by her invisible illness comic that you all loved so much, we decided to make it into a magnet! Scroll down to the bottom of the page for entry details.

A young girl carries signs that say she has MS, sorry it's not visible.

What’s one thing you wish people knew about MS?

We asked our advocates, “What’s one thing you wish people knew about MS?” Here’s what they had to say:

The invisible nature of MS

  • Most MS symptoms are invisible to others, so please keep an open mind.
  • I wish people knew what was behind my smile, that they knew how hard I work to look this normal. It takes a tremendous amount of work to hide the struggles that are underneath.
  • Everyone’s MS battle is different, but nobody’s is easy. There will be many periods of peaks and valleys with this disease & some days your biggest accomplishment might be an emotional, spiritual or mental triumph that only you can feel, not a physical one that can be seen.

Symptoms are chronic, debilitating, and so much more intense than others understand

I didn’t do anything wrong

  • I wish people knew that we don’t have MS because of some bad habit or poor lifestyle choice.

It’s more than just a disease

  • MS, it’s not just a disease, it’s an industry! As pharmaceutical companies reap billions in profits on MS treatments, MS patients shouldn’t stand for the status quo – it’s time to DEMAND that research dollars be focused on finding a cure, not simply more treatments!

It’s different for everyone

  • That multiple sclerosis affects everyone differently and may affect the same person in different ways throughout the course of their journey. Living with MS means facing a world of unpredictable challenges daily and learning to live life one day at a time.
  • I wish people knew that everyone with MS deals with their own difficult symptoms. Each person with MS may look different, but in the end we all have one common goal–a world free of MS.

An MS diagnosis isn’t a death sentence

  • Even though it might feel like it, an MS diagnosis isn’t actually the end of the world. It’s the start of the rest of your life and if you can avoid looking back and playing the “if only” game, it might make you a better, more contented person (it certainly did for me).
  • No matter how alone you feel, there are millions of us with MS who understand. Seek out your own MS tribe and don’t try to do this solo – we really are stronger together. #WeHaveMS
  • One thing that I wish people knew about MS is that though it is, or can be, the thief of functionality, it can also gift the wonderful art of finding appreciation in life in spite of such an affliction – if you let it.
  • The reality is: you are stronger than your MS. Don’t give the disease more credit than it deserves. We are proof positive that your life can flourish even after your diagnosis.
  • I wish people knew that MS isn’t a death sentence – but it is a life sentence. Emphasis on LIFE! There’s a lot of it to be lived after diagnosis.

World MS Day Magnet Giveaway

We are SO excited to be giving away the custom magnet at the top of the page designed by our advocate and artist Brooke. Check out the comic that inspired this piece, and enter to win below.

The giveaway will be held for one day only on May 30, 2019, from 12:00 am to 11:59 pm eastern time. Twenty (20) winners will be randomly selected to win and notified via email. The winners have 48 hours to claim their prize before an alternate winner is selected. Please read our terms and conditions here. Best of luck to all entrants!!

Enter to win

For a chance to win our World MS Day Magnet Giveaway:

  • Scroll down to the email submission box, enter your email address, and click or tap the Subscribe button. It’s that easy!
  • For one BONUS entry, share in the comments below what’s one thing you wish people knew about MS?

This giveaway is now closed. Thanks for entering!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Dede74
    5 months ago

    Devin, I just read your article on COG FOG, literally brought tears to my eyes. I have experienced so many of those same things. It literally feels like I am losing my mind sometimes, I honestly tried to put a step stool into the fridge the other day. I could not understand why it would not go in there, then OH lightbulb finally went off it goes into the pantry!! I honestly only find relief in being able to laugh about these things especially in front of my husband and my sons. In side though I am bursting with frustration, because I cannot explain this. Also how you mentioned following conversations with friends, I totally forgot in mid sentence what I was saying. Thankfully my friend is so understanding, and gave me a hug told me not to worry about it. I have a B.S. in Environmental Science, but the reality is I never got to apply it, because well… I believe you already know the answer. I just try to keep smiling,but deep inside it truly hurts, I cannot let that control me though. I have to do my best to live for the present, and enjoy everything I am able to do right now! As always way to go on your article, thank you so much for writing such a wonderful piece on a symptom that others that do not have MS may not understand at all.

  • Crystal
    6 months ago

    Thank you Devin. You are right…many people judge before knowing what’s really going on in someone’s head with MS. I was even told by my sister that I “look fine”. Take care

  • Nomdeplume
    6 months ago

    Okay, I’m going to be a grump…How is it that this article is posted on May 29th and, on June 1st, a message reads, “This giveaway is now closed. Thanks for entering!”?

    I have one other comment to share related to the article content, which may also seem negative, but I think it is an important one to share. There is this misconception that “MS isn’t a death sentence.” It is true that, for the majority of people with MS, the diagnosis is not a death sentence. Thankfully, many people even lead relatively “normal” lives. However, on the other end of the spectrum, there ARE those people with MS whose course is much more severe and who, frankly, have much shorter lifespans than they would have had without MS. I know several people who have died from MS. Death may have been secondary to infection from bed sores, or pneumonia, etc., but the underlying cause was MS. It is a very stark reality for some people with MS and I wish there was more discussion about that. Our own community apparently needs awareness of this. We can’t pretend that MS doesn’t have this ugly side. We are doing a disservice to those unfortunate enough to have to go that path. For some people with MS, it is, eventually, a death sentence. Plain and simple.

  • Devin Garlit moderator
    6 months ago

    Hi @Nomedeplume, thanks for taking the time to comment. I can’t really speak to the length of the contest, except to say sorry for it’s brevity. As for the “MS isn’t a death sentence” part, that was something one of our contributors added, it’s something they wished for others to know. We (the contributors) come from all walks of life and experiences with regards to MS and aren’t always in agreement. I can’t really speak to what this contributor wanted to convey, but I imagine it was something to be empowering and positive and to help others be less afraid. I on the other hand very much understand what you are talking about (and have lost a grandfather due to complications from MS), if you want, you can read my take here (and please, I encourage you to comment there if you are so inclined): https://multiplesclerosis.net/living-with-ms/unthinkable-death-life-expectancy/

  • Shelby Comito moderator author
    6 months ago

    Hi @marieantoinette, thank you so much for taking the time to share your feedback with us. We intended this giveaway to be a one day giveaway as a special opportunity for World MS Day, but the short window of time was challenging and definitely something to reconsider for next year. And, as Devin mentioned above, the “MS isn’t a death sentence” line was a quote from an advocate, but we did include it on our Facebook post as well, and we will definitely be more sensitive to using this kind of language in the future. Again, we truly listen to our community members and deeply appreciate that you shared this feedback with us as we will take it to heart! – Shelby, MultipleSclerosis.net Team Member

  • klane2325
    6 months ago

    Just because we had a great day yesterday, does not mean we’ll have a good day today. We most likely need to recover.

  • Devin Garlit moderator
    6 months ago

    So very true @klane2325! Thanks for chiming in!

  • Dianne Scott moderator
    6 months ago

    Hello @klane2325
    How right you are! I’m sure many of us can relate.. Thanks for contributing.
    Take care,
    Dianne, Moderator

  • isuzyq01
    6 months ago

    Please emphasize there are different types of MS and some of us don’t get the chance to have a remitting period of symptoms. It’s a 24/7 x 365 days a year that we have symptoms because only 10-15% of people with MS have Primary Progressive MS. When people hear you have MS they may also know someone who has it but they seem to be doing fine. I just wish that people knew enough to ask what kind of MS do you have. I would feel at least they know enough about it to ask.

  • Devin Garlit moderator
    6 months ago

    Thanks so much @isuzyq01, I agree, this is something that gets lost among the masses, along with different types, we are all so different, even among those with the same type. I wish that those differences could be emphasized in a way to teach people to stop comparing us to each other. Thanks again for bringing it up!

  • Dianne Scott moderator
    6 months ago

    Yes, @isuzyq01, you make a very good point. This is exactly why bringing awareness to Multiple Sclerosis is so very important and why this article (& others) can have a huge impact on those that don’t know about the plethora of aspects of MS and what we face.
    Thanks so much for weighing in!
    Hang in there,
    Dianne Scott,
    Moderator

  • CarolJoy
    6 months ago

    I’m having the hardest time finding a Dentist Office that can accommodate my 24/7 Powerchair, which includes full recline, with a comfortable space for their services Nor do they have a spacious restroom. Then there’s nothing strong enough that can numb me. I feel everything, thank you MS. Do you have this inconvenience as well??

  • Dianne Scott moderator
    6 months ago

    Hi @caroljoy,
    Indeed I have experienced some of the very same challenges.. and similar issues at the opthamologist, GYN, Etc. As if it’s not hard enough to get there, the offices are not ‘disabled friendly’. Home visits and services would be nice, but hopefully accommodations will be established in our very near future. Wishful thinking perhaps, but I’ll just remain hopeful. ☺
    Thanks so much for your contribution to the article…
    Hang in there,
    Dianne Scott,
    Moderator

  • Stan
    6 months ago

    Its easier to pretend to feel good than to explain why you dont.

  • Devin Garlit moderator
    6 months ago

    Thanks so much @Stan, that’s a great one and oh so very true!

  • zeus73
    6 months ago

    It’s not easy to pretend to feel good but you’re right, it is easier than conversations about why I don’t.

  • Dianne Scott moderator
    6 months ago

    @zeus73,
    I understand as I’m certain many of us here do.. And that’s why the community’s here for you. Thanks for sharing with us.
    Take care,
    Dianne Scott, Moderator

  • Dianne Scott moderator
    6 months ago

    Hi @stan ..

    I definitely see where you’re coming from, but remember that if noone else understands, you have the community. We get it.

    Hang in there, my friend, and thank you for sharing your thoughts.

    Best,
    Dianne Scott,
    Moderator

  • Dianne Scott moderator
    6 months ago

    Hi @caroljoy,
    Indeed I have experienced some of the very same challenges.. and similar issues at the opthamologist, GYN, Etc. As if it’s not hard enough to get there, the offices are not ‘disabled friendly’. Home visits and services would be nice, but hopefully accommodations will be established in our very near future. Wishful thinking perhaps, but I’ll just remain hopeful. ☺
    Thanks so much for your contribution to the article…
    Hang in there,
    Dianne Scott,
    Moderator

  • ChandraJohnson
    6 months ago

    One thing I wish people knew is that I’m not just overly clumsy. I don’t drop things on purpose or to be funny. It’s hard to hold onto things when the hands are numb all the time.

  • Devin Garlit moderator
    6 months ago

    Thank you @ChandraJohnson, I very much agree, our disease can so often make us appear clumsy, when that’s not the case at all. Like you, I constantly drop things, it’s so incredibly frustrating on it’s own, but when someone laughs or makes light of it, many times that can be the straw that brakes the camel’s back for me. It’s just becomes unbearable!

  • Dianne Scott moderator
    6 months ago

    Oh yes, @chandrajohnson, you pegged it! How true this is. I’m sorry that you..we.. have to endure any of the perils of MS. Thanks for your comment.. It adds to our purpose to make others aware of our plight.
    Wishing you all the best,
    Dianne Scott,
    Moderator

  • Mandrews
    6 months ago

    I wish people would understand how expensive treatment is for MS. We need a cure . Not new treatment. It is very challenging to keep working for insurance. But healthcare only pays a fraction. Then you go into debt thousands of dollars every year just to try to live a “normal” life.

  • Dianne Scott moderator
    6 months ago

    @mandrews,
    I hear your frustration and know that we stand with you – especially relative to needing a cure for MS. I believe it’s coming because scientists are hard at work to create one. I have faith that it will happen.. Until then, we do what we have to do to live our best life.

    Take care of yourself and thanks so much for contributing. Remember, the community is always here for you!

    Best,
    Dianne Scott,
    Moderator

  • Karla2230
    6 months ago

    I wish people knew that no matter what battle we are each have we all are trying our best, I wish people knew please do not give unsolicited advice

  • Dianne Scott moderator
    6 months ago

    Hi @karla2230,

    Two very common points amongst our fellow MS’rs.. Thanks for weighing in!

    Be encouraged,
    Dianne Scott,
    Moderator

  • mynameisAmbernotMS
    6 months ago

    That MS doesn’t mean I can’t be a parent and does not make me any less of a parent. Many people have told me I need to stop having kids because of my MS. It does not define me or me as a parent; it is just a part of my life.

  • Dianne Scott moderator
    6 months ago

    Extremely good points to share,
    @mynameisambernotms! Thanks so much for doing so..
    Happy mothering to you!
    Best wishes,
    Dianne Scott, Moderator

  • lisnlar
    6 months ago

    MS isn’t who I am, but it isn’t anyone’s fault that it’s here in my life.

  • Dianne Scott moderator
    6 months ago

    Very important fact to be cognizant of, @lisnlar!
    Hang in there, fellow warrior, and thanks so much for your addition,
    Dianne Scott, Moderator

  • Nancy04232004
    6 months ago

    I wish that employers would understand that they could have an employee that has MS; especially the invisible type. They need to know what MS is and be aware that MS will not interfere with the daily operations of the company for employees who have MS.
    Employers need to know that employees who have MS can function as a normal person; doing their job as assigned and can perform it successfully.
    Not all employers know about the ADA provisions for those with disabilities. They simply are not educated about this and I feel that this is very important that the HR Department of the company be aware of this and apply it each time that is needed; so that the employee who has the MS can feel free to request the ADA provisions without retribution so they can be able to be like those without MS in earning a decent living by working.

  • Dianne Scott moderator
    6 months ago

    Absolutely, @nancy04232004, absolutely! I agree that there should be education across-the-board with employers about MS and other chronic diseases as well. Many are uninformed and it’s impact on those afflicted and their employment is always negative. It doesn’t have to be this way… With awareness and education.
    Thanks for sharing,
    Dianne Scott, Moderator

  • Karla2230
    6 months ago

    I truly appreciate your answer because I have work for three employers the never understood what Ms was. My one job when I was first diagnosed looked at me completely different my second job when I told him I had a mess and had a relapse they threatened to fire me while I was on leave and also told me the elevator was broken and couldn’t be fixed. The place of mine now I’m in a Union and I wish unions had sectors for people specifically with disabilities. I have one co-worker who understand and that’s because he work with me everyday 8 hours a day, other than that they just look at me and roll her eyes when I walk in with my cane.

  • Dianne Scott moderator
    6 months ago

    Hi @karla2230,
    I’m so sorry that you have to endure this treatment. It’s 2019 with a plethora of ADA laws that employers should be complying to … Yet they do not making it a stressor which does not help MS at all. Praying things get better for you and thanking you for weighing in and sharing your experience.
    Best,
    Dianne Scott,
    Moderator

  • Ctruett73
    6 months ago

    I wish people understood that being outside in this heat makes me feel terrible.

  • Dianne Scott moderator
    6 months ago

    Oh yes, @ctruett73!
    I and so many others truly can attest to this. Thank you for sharing!
    Take care – and please stay cool,
    Dianne Scott, Moderator

  • Keashashanell
    6 months ago

    I absolutely know what your saying. I have a cooling vest for the summer my daughter says it looks bad but it keeps me cool during the summer. I got it from the ms Foundation

  • Dianne Scott moderator
    6 months ago

    Hi @keashashanell,
    It’s all about staying cool – and safe. I’m happy the MS Foundation was able to assist you with getting a cooling vest,
    Thanks for weighing in,
    Dianne Scott, Moderator

  • Lovespenguins
    6 months ago

    I wish people understood that even if I look like I feel better it doesn’t necessarily mean I do. It takes so much of my energy to do the simplest task like taking a shower or sweeping a floor. I go to bed tired and wake up exhausted. Most days I need a nap just to make it through to the next day.

  • Dianne Scott moderator
    6 months ago

    Hi @lovespenguins,

    Living with such challenges are indeed tough, but kudos on your daily fight .. You are a conqueror!
    Thank you so much for taking the time to comment.

    Best,
    Dianne Scott, Moderator

  • Calie Wyatt moderator
    6 months ago

    @lovespenguins absolutely! I wish more people knew this as well! Thanks for weighing in!

    Best wishes, Calie, MultipleSclerosis.net Team Member

  • BrianneAM1990
    6 months ago

    I wish people knew that I appreciate being invited to events like birthdays and I hate that I have to cancel when I’m having a bad day but I still like to be invited

  • Calie Wyatt moderator
    6 months ago

    @brianneam1990 yes! I think many in this community can agree on that! They have no idea how heartbreaking it is to have to cancel plans yet again. Regardless, an invitation is always appreciated! Thank you for sharing with us.

    Best wishes, Calie, MultipleSclerosis.net Team Member

  • Soksandshoes
    6 months ago

    BrianneAM1990 … I agree! My “friends” say … “You always have and excuse” … well I feel good when I get the invitation, but when the day comes … sorry if I’m too tired☹️ to make a party that starts at 8pm, or 9pm etc.

  • Vicky
    6 months ago

    I wish people knew that the heat weakens my muscles. They say, Oh you don’t like heat. No, heat does not like me!

  • Devin Garlit moderator
    6 months ago

    Thanks so much @Vicky! Helping folks understand the challenges of temperature is always something I’m making an effort at. It’s not that I just dislike the heat, it’s bad for me.

    fyi, here’s a bunch of other things about heat and temperature I wish folks would understand: https://multiplesclerosis.net/living-with-ms/some-things-wish-people-knew-temperature/

  • Dianne Scott moderator
    6 months ago

    Ahhh.. great way to term it, @ragalynnannemuffin.. The heat can definitely be a deterrent to warmer climates and activity where heat can ensue when living with MS. Stay cool and be safe! Thanks for taking a moment to comment.
    Best,
    Dianne Scott, Moderator

  • Keashashanell
    6 months ago

    With ms heat can make us sick. Even as simple as the water being to hot during a bath or a shower. It can paralyze the muscles.

  • Dianne Scott moderator
    6 months ago

    That’s a fact, @keashashanell.
    Thanks for contributing to the post, Dianne Scott, Moderator

  • MomofThree
    6 months ago

    I might look like I am a Person with an Access and Functional Need, but I am.
    At least two hours of my day are devoted to naps. Fatigue is a major part of my life.

  • Dianne Scott moderator
    6 months ago

    @momofthree,
    Fatigue can indeed be debillitating in and of itself. I’m certain many members of the community can attest to that. Thanks for sharing your thoughts.
    Best,
    Dianne Scott, Moderator

  • bleehunt814
    6 months ago

    I wish more people realized how isolating this disease is. Old friends seem to be going on with their lives and I’m left in the dust. If I call someone then I have to ask for a ride which is so hard for me to do… and what if the MonSter rears it’s ugly head and I end up not able to go anyway?

  • Devin Garlit moderator
    6 months ago

    Thanks so much @bleehunt814 and @drewicf, I completely understand. The isolation and loneliness (https://multiplesclerosis.net/living-with-ms/the-loneliness-of-ms/) this disease can bring often times feels like the very worst issue it causes, to me anyway. It can feel downright unbearable at times. I wholeheartedly agree that more should be done to convey this!

  • Dianne Scott moderator
    6 months ago

    Hi @bleehunt814 and @drewicf,
    Your thoughts and experiences mirror so many others in the community I’m sure. Wishing you both peace along this journey and thanking you for sharing with us.
    Be encouraged,
    Dianne Scott, Moderator
    multiplesclerosis.net

  • Drewicf
    6 months ago

    I know exactly how you feel! I just want to be able to do these things for myself but I am unable to. I know I shouldn’t but I feel like a moocher when I have to ask for something as simple as a ride. Glad I do have a parent and a couple friends that understand the situation that I find myself in.

  • Grammie7
    6 months ago

    I often feel SO guilty needing help! I hate complaining to my husband and cancelling on plans or worse yet, not even making plans because I’m never sure how I’m going to feel!

  • Dianne Scott moderator
    6 months ago

    @grammie7,
    Yes, those emotions are quite real and unnerving. We know how you feel and we are here for you. Thank you for sharing your thoughts here in this safe place.
    Warmly,
    Dianne Scott, Moderator

  • SilverSais
    6 months ago

    I’m in a wheelchair so no longer invisible – just an obstacle blocking the aisle or sidewalk. But I wish people would realise my brain still works – well, most of the time but in weird ways.

  • Dianne Scott moderator
    6 months ago

    @silversais,
    An aspect many of us share with you. Thank you for taking the time to comment.
    Hang in there,
    Dianne, Moderator

  • CarolJoy
    6 months ago

    I put lights on my 24/7 Powerchair and kinda pimped it out too. It was fun and people see me now. July 4th and Christmas I definitely get a little carried away. Have fun with it!!

  • kjhodge
    6 months ago

    I wish people would know that I like talking about my MS but I also hate talking about it because I don’t want people to feel like I’m looking for pity!

  • Devin Garlit moderator
    6 months ago

    I completely understand @kjhodge! It feels like such a fine line to walk some times. I really do hope that I’m simply trying to educate and build awareness though, trying to “normalize” my condition for them.

  • karinjoy
    6 months ago

    A different diet may not help me! Yes, I heard that such and such diet helped her. It did not help him. If I get one more suggestion about a diet I will ask that that person comes to cook for me!

  • Cristina77
    6 months ago

    MS has made me stronger in my weakest moments.

  • Devin Garlit moderator
    6 months ago

    Thank you @Cristina77, I very much agree. Though I wish I didn’t have this disease and I wish my life hadn’t been so derailed by it, I do think it has made me stronger, it’s hardened me in good ways and I also think has made me a better person, who is not only stronger, but who has learned to appreciate more of the world.

  • Rwhit
    6 months ago

    MS is different for everyone.

  • DarinandDebbie
    6 months ago

    I wish people knew that I really do need my handicap parking spot, even though they can’t see the reasons why!

  • Shelby Comito moderator author
    6 months ago

    I hear you, @darinanddebbie, and I know that this is something here that many here would wholeheartedly agree with! Thanks so much for taking the time to comment. – Shelby, MultipleSclerosis.net Team Member

  • Neese
    6 months ago

    I wish people understood how difficult it is for me to do things that most people consider simple. Like taking a shower. Sometimes just that one shower will exhaust me to the point where I physically can’t get out of bed the next day because my body is too weak to move.

  • Devin Garlit moderator
    6 months ago

    Thank you @Neese, many times it’s those tasks that others take for granted that really has an effect on us. I cancel so many plans because I get wiped out simply by taking a shower (I’ve written some on that here: https://multiplesclerosis.net/living-with-ms/the-unexpected-perils-of-showering/)!

  • SLZ2
    6 months ago

    Just because I have MS. I am still the same person I was before ms. I still like the same things. Still love my kids and grandchildren. If I can’t do something or need help I’ll ask. But I’m still me.

  • Dede74
    6 months ago

    One thing I wish everyone knew about MS, is the cognitive issues that people with MS are completely different. Memory issues, word finding, and speech difficulty can be the most frustrating part of having Multiple Sclerosis when talking to people.

  • Devin Garlit moderator
    6 months ago

    Thanks for mentioning that @dede74, I feel like cognitive issues are seldom discussed enough and something that is not really on the general public’s radar when they start thinking and talking about MS. It’s a very real and considerable issue though: https://multiplesclerosis.net/living-with-ms/my-cognitive-changes-because-of-multiple-sclerosis/

  • Susiesunshine79
    6 months ago

    I wish that people would understand that I am not just making things up or making excuses. Every day is hard, some days more than others!

  • Devin Garlit moderator
    6 months ago

    Thank you @susiesunshine79, I often feel like I cancel so much, that even I feel like I’m making excuses, even though I’m not. So I too hope people understand that and can cut us some slack!

  • JimmyMac
    6 months ago

    It’s OK not to know boo about MS. We don’t why X was diagnosed and went to a wheelchair a month later but if you only know X it doesn’t mean everyone with MS will end up physically disabled.

  • DonnaPeriard
    6 months ago

    The way I look usually doesn’t match the way I feel.

  • Crystal
    6 months ago

    I wish people realized that you may look fine on the outside, but suffering so much on the inside. I also wish that many MS patients have depression and anxiety and it’s not a simple fix.

  • Devin Garlit moderator
    6 months ago

    Thanks so much @vanvlec72, it is so frustrating to look one way but feel another. Too many people in this world judge a book by it’s cover, no matter what we try to teach them. Depression and anxiety are massive issues for those of us with MS, and too often they are not addressed properly: https://multiplesclerosis.net/living-with-ms/its-time-to-get-real-about-depression-and-suicide/

  • kkcurtis
    6 months ago

    I wish people understood we are not being dramatic or exaggerating our symptoms. Normally you will only see us on a “good” day; you don’t see the days we can’t get out of bed because our legs won’t work, the days when the pain is so bad we can do nothing but cry, or the days when the fatigue is so bad that just thinking about taking a shower is overwhelming. So when you see us out and about, we are not “cured”, we are just having a day when our symptoms are more manageable. And if you should see us the day after with our cane, walker or chair, we are not using them to get your sympathy or attention; more than likely, we are using them because we over did it the day before and are now reaping the consequences for trying to have just one normal day.

  • Devin Garlit moderator
    6 months ago

    Thank you @kkcurtis, so very true!

  • chong61
    6 months ago

    The one thing I wish people knew is just to understand.

    Imagine sitting in your Sunday School class and one of the men making the comment disease is God’s way of showing you are a sinner. I could not stop myself, even though this is the first Sunday my husband and I was in that class. I told the entire class that there was no way God was punishing me by giving me MS and that he needed to understand. He did not, unfortunately 2 months later his wife was diagnosed with cancer of both breasts. I wondered if he ever thought of how he judged me.

  • Shelby Comito moderator author
    6 months ago

    I cannot believe these words were said to you @chong61! I am so shocked and heartbroken to hear that. Others’ judgments can be both so hateful and hurtful. Thank you for sharing your experience here. – Shelby, MultipleSclerosis.net Team Member

  • StephKy
    6 months ago

    I wish that people were more educated to understand that even if you are walking it does not mean you dont have MS. The person states “well looks like your doing ok”. I just say yes. I get tired of having to explain all of my symptoms that people can not see. It’s like I have to convince people that I have MS when they have no ideal how I really am feeling.

  • Devin Garlit moderator
    6 months ago

    Thank you @StephKy, no matter how they may intend it, hearing that we “look good”, when we feel awful inside, can feel incredibly dismissive!

  • rabcab
    6 months ago

    I almost wish there WAS something visible so others would understand why I walk lopsided, even with a walking stick and why I don’t just jump up from the table and then have to wait (to walk) until my body is oriented.

  • Devin Garlit moderator
    6 months ago

    Thank you @rabcab, I very much understand, I feel like it’d be just a tad easier if people could actually see and so, understand, what is wrong with us.

  • rabcab
    2 months ago

    THANKS, Devin! I also wanted to tell you that the article on 9/4, Thinking Compromised – you are NOT ALONE, my friend, you are NOT ALONE!!!

  • collena
    6 months ago

    I wish people (including me) had a better understanding of the how and why I ended up with this. Even if it wouldn’t change anything, it might help my children to know and by default it would(might) help me with un-needed feelings of guilt.

  • Devin Garlit moderator
    6 months ago

    Thank you @collena, it’s hard not to have those thoughts. We all wrestle with the “why me” questions. Those thoughts can eat you up though.

  • Bobbi
    6 months ago

    I wish people understood the look on my face is me trying to comprehend you comment and process it. Not me judging you.

  • Devin Garlit moderator
    6 months ago

    Thank you @Bobbi! I too very much wish people understood that. Too few people understand the cognitive issues that we deal with: https://multiplesclerosis.net/living-with-ms/my-cognitive-changes-because-of-multiple-sclerosis/

  • jfrendek
    6 months ago

    I’m not even sure it’s possible for healthy people to realize what it’s like. I live with a constant headache beyond that of a normal headache. I feel fatigue beyond any exercise fatigue even in muscles I never knew I had. I have so much brain fog it’s a struggle to hold a conversation. I have constant peripheral neuropathy in my hands, feet and face. Those are just the 4 worse symptoms. I occasionally become fecal incontinent. That’s a mild symptom to me!

  • Devin Garlit moderator
    6 months ago

    Thanks @jfrendek, that’s certainly why many of us believe that you don’t “get” MS until you get MS. Many folks would be astounded if they could spend just a few minutes in any of our bodies!

  • keishahester
    6 months ago

    I wish that people understood how hard it is to battle MS (or any chronic illness) and that, for us, it’s EVERY DAY. Too often people offer me advice or suggestions that don’t see the whole picture. Or worse, they’re condescending in belittling either the symptoms or their assumptions of how much we’ve already tried to make ourselves better. “Yeah, almost 4,000 days living with this disease and THAT never occurred to me!” is a sentence I think often. Very loudly.

  • Devin Garlit moderator
    6 months ago

    Thank you @keishahester, you definitely speak for many of us, myself included, with that wish!

  • CarolJoy
    6 months ago

    People need to understand there are The 4 Types of MS , not just MS, and their difference. MS should always defined what type you’ve been diagnosed with each are different:
    RRMS, SPMS, PPMS, PRMS

    I have PPMS… went from a couple of falls to a cane, walker, manual wheelchair, to permanently in a powerchair in 1 year — it was NOT A slow progression it was a very quick progression. This all comes with leg spasms, muscle paralysis, tongue numbness, bladder and bowel issues

  • isuzyq01
    6 months ago

    I too have PPMS and very few people know there is different types. I’d love to have remitting periods of time.

  • linzlandis
    6 months ago

    I wish I could convey how the struggle with fatigue and exhaustion is endless, how the pain in my legs rarely subsides– but the hardest part is balancing those things with the desire to be who I “used to be.”

  • Devin Garlit moderator
    6 months ago

    Thank you @linzlandis, all of that very much somes up my life with MS as well.

  • KittyG
    6 months ago

    On days I feel stronger, I tend to overdo and I pay for it the next day.

  • Devin Garlit moderator
    6 months ago

    Thank you @KittyG, I think many of tend to overdo it and pay for it the next day. People don’t tend to witness just how much we pay for it though, I wish they could: https://multiplesclerosis.net/living-with-ms/paying-the-tax-the-day-after-being-active/

  • flora68
    6 months ago

    I wish people knew that, despite the fact that MS patients can’t donate blood or body tissues or organs, MS is NOT contagious.

  • Jan64
    6 months ago

    I can still be smiling when the pain is agonising!

  • Devin Garlit moderator
    6 months ago

    Thanks so much @Jan64, I very much wish folks understood MS and pain more in general: https://multiplesclerosis.net/living-with-ms/the-torture-that-is-chronic-pain/

  • FullofGritandGrace
    6 months ago

    That I’m doing the best I can to live the best life possible with my MS.

  • Shelby Comito moderator author
    6 months ago

    Love this @fullofgritandgrace and really appreciate you sharing your encouraging perspective! – Shelby, MultipleSclerosis.net Team Member

  • mstiffsc
    6 months ago

    I have really good days and I have really bad days, but chances are I won’t let on when I am having a really bad day.

  • Devin Garlit moderator
    6 months ago

    Thank you @mstiffsc, I think those of us with MS are some of the best actors and actresses out there because of the way we learn to hide our bad days!

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