Things I wish more people understood about living with Multiple Sclerosis

These past few months for me have been terribly difficult. I think I have experienced every emotion imaginable. I have cried more than usual, lost my temper for seemingly stupid and even unknown reasons, and become more withdrawn than I ever thought possible simply because my body and brain won’t cooperate.

I can literally feel the changes happening in my life, so much so that if I allow my thoughts to linger on my increasing weakness and struggles, it scares the crap out of me. (That’s just me being honest.)

It’s hard to talk with people about those fears and the crazy emotions I deal with mainly because, 9 times out of 10, I am met with “Oh, it can’t be that bad” or “You just need to think more positively.” I find it to be exhausting trying to explain progressive MS to people who aren’t willing to actually listen.

Here are a few things I wish more people would try harder to understand about life with Multiple Sclerosis:

1. There is no cure

No matter what you read online or hear people say, there’s nothing that has been proven to eradicate the disease from a person’s body aside from a miracle. There are symptom management techniques through supplements and diet and medications that work to slow the progression down, but that’s not a cure.

2. My symptoms are unpredictable

One minute I may be doing well managing the pain, weakness, sluggish thought processes, and vision difficulties. The next minute I may need to climb into bed and be unable to move for hours. I am not being lazy. I’m taking the rest my body needs in order to function. You have to remember, it’s fighting every second of every day just to survive.

3. Things will get worse

I know you think that’s not being positive enough, but no amout of not talking about the truth will help others (or even myself) come to terms with my reality. MS is progressive. That means that as time passes, symptoms will build and my life will become more difficult. I need to prepare for the possibilities of tough times so I’m not caught off guard when they happen. Help me to not allow my difficulties to be the only thing I focus on, but allow me the space needed to face the truth.

4. I need help

Just because I don’t ask for help every time I do something doesn’t mean I don’t need it. From my perspective, I see the burden I have become on others and know that in the future it will be an even greater need. I also know that I can’t give back like I could in times past. Those thoughts weight heavy on me at times. Regardless, never stop asking if you can help. Just the asking makes each day better because it shows me you care.

5. Please invite me

I know I am limited in the places I can go because I have to ensure accessibility and that it’s not too late or I’m not too tired, but please don’t decide for me if I can join you for a time out of the house. You may hear no more times than yes, but I feel included when you ask.

6. Little things matter

I know it may sound silly, but a text asking how I’m doing or just to say “thinking of you” makes any day brighter. So does picking up the mail, dropping off a meal, doing a load of laundry, taking out the trash or just sitting for a chat. Those things matter more than you will ever know.

7. Don’t get offended

I have a brain that can’t keep information in order. If I don’t remember a special date, have trouble putting words together into coherent sentences or I’m not engaged in a conversation, don’t hold it against me. Most of the time it’s difficult to keep things organized in my head. Even with lots of notes and reminders I confuse things.

MS Gets on My NervesMS WarriorMS Superhero  

About the Author
About the Author
Penelope Conway

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

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  1. Melissa
    Melissa says:

    MS is BS.
    It is an incredible mix of diverse symptoms!
    Thank you Penelope for setting the record straight!
    Many blessings to you and yours!!!
    Love and prayers to all

  2. Wendy Galler
    Wendy Galler says:

    Dear Penelope,

    Thank you for wonderful posts. I was watching a program about the first “bionic Olympics.” There were events for individuals who use adaptive equipment in daily life. There were events for power wheelchairs, prosthetic legs & arms, etc. The obstacle courses were of normal challenges we face everyday like getting up a ramp & thru a door, opening a can, slicing bread, etc. The crowd cheered for everyone & I thought wouldn’t it be great if we all had our own cheer squad! So, to all of you reading this please know I’m cheering every step you take, every effort you make. I know how difficult it is as I too I’m living it. Consider me your cheer squad. I’m amazed at how many suffer without much support or encouragement. Next time you’re struggling I hope you can hear my cheering!
    “Yes, you can do this!!
    You are such an inspiration!
    Not only do you rock you also rule!
    Keep going!
    Don’t stop fighting this MonSter!
    You are a Mighty Strong warrior!
    I love you!”

  3. Tilly J
    Tilly J says:

    I so wish people could understand more what goes on in the background. am loving reading your blog, keeps us all going and talking about it

  4. Juana Driver says:

    Thank you for this brutally honest description of daily life! My heart grieves for you and my self. So wish I had a recording of this to share on demand! Thank you for sharing and lifting us up each day!

  5. Harconan Ryan says:

    You are one of the strongest people I know your little funny Twitter messages and Facebook make days a little better. The past month or so I have felt pretty bad but as you’ve been there making me laugh when it seemed blue just remember anyone on here has your back. Vent to us let it out. Big hugs.

  6. Becky Reister Pelsor says:

    I never imagined at 62 being so restricted in where I can go! Because of MS my vision is impaired, I feel so angry at times because I have to limit driving to daylight hours and only to and from my town, 5 miles. I miss shopping, visiting friends, going to evening events unless I rely on someone else. I am fortunate, slot of other patients with MS have more problems, but fatigue, heat intolerance, inability to sleep, leg cramps, vision problems, ear pain and emotional upheavals are not how I imagined myself at this age.
    I pray they soon find the cause for nasty chronic disease!

    • C Cassidy
      C Cassidy says:

      You are very lucky at 62 to be driving! My husband at age 48 drove though our home twice. He has not been allowed to drive for 10 years. Have you been aproved to drive????? If not please stay off the road and find a driver. My husband has progessive MS. He spends most of his time in our condo. We are always grateful for what we have, not what is no longer part of our life.

  7. Ethel Himel says:

    Yes I have been depressed so bad last few days, crying and I think peo think lm lazy. I would love to go back to work,but I can’t. Was a caregiver some weeks worked 84 hours but I can’t take care of myself now, I’m weak and tired and depressed. Muscles hurt I’m dizzy and I have a prob about saying something before I realized what I said no filter. Last nite I was hurting so bad took 200 mg gabapentin and 800 mg of ibprofene that finally helped

  8. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Well it’s nice to read all the replies an your post Penelope. I have just had a horrible event happen this morning. I have a problem with my legs trying to stretch hard and doing that this morning caused a dreadful pain that is starting to go away slowly. It is the first time it hurt so bad and I don’t like it.
    But I must go and get breakfast for us so keep it up Penelope I am thinking of you and you have helped me of the time. Thank you.

  9. Marsha Bell says:

    Hugging you with prayer right now, specifically for any bit of relief or greater endurance or both, by the Lord’s perfect will, and for gratitude for giving you the words and heart of a warrior-encourager!

  10. Sue Emery Manganaro says:

    All of us living with MS wish others could understand what we are experiencing. Thank you for educating those people who are clueless. I wish you a positive attitude no matter how difficult things get. Please know what you are doing is fantastic and reaching and teaching so many people. ❤️

  11. Jane
    Jane says:

    I wonder if it is something in the air right now bringing us down. I, too, have been having an extremely difficult time over the past couple weeks. But I know the reason this time. It was my last neuro visit. It was a real “downer”.

  12. Brandi Duncan Holt says:

    Exactly what most of us go through. You nailed it. It sucks! Mood swings, falling, choking on everything, dropping everything, no sleep and let’s not forget the never ending pain. Trying to smile and make it through the next day without complaining. Thank you Penelope….much love to you.

  13. Michelle Brovitz
    Michelle Brovitz says:

    There IS a cure. The FDA has not yet approved it, but other countries have successfully been using it for years. I’m going to Mexico for Hematopoietic Stem Cell Transplantation next year. Do your own research.

  14. Nikki Odele B-Deherrera says:

    Dont feel bad thats how my last 6 months have been. Im relapsing with MS and its the worst its been in over 20 years. I am having new imaging done next week and looking at stronger medical options. I hope you start feeling better soon.

  15. Marlene Sheaffer says:

    I agree, if someone, even family, do not understand this type of MS. They usually don’t even try to learn about it, sadly. They expect everything to be okay with you, as long as you can do what either they can do, or expect you to be able to do. They just don’t want to accept MS as a debilitating and progressive disease. When I lost everything four years ago, everyone thought I just gave up. But, my Neurologist knew my MS was getting worse. I didn’t give up any hope or dreams, my body was just failing me , I hope someday people will realize what this means to the person with MS.

  16. Martina Reck says:

    You put it so right. I wish I could explain it like that but I get also quite tired to always explain myself. People can’t understand that every day is different to me and even if I look fine I don’t feel like that.

  17. Donna Hubbard-Leach says:

    You have said it all, my dear! When I became ‘progressive’, (lets face it, we are now regressive), no one knows how I felt! This sucks! As a ‘newlywed’, (now 4 years), I feel that I am not being the wife I want to be. That leads to a world full of guilt! I wish that I could give to you a big hug right now! Much love! ❤️❤️❤️

  18. Patti Stephens says:

    Sorry you are having a rough time, but please know that you are an inspiration and a ray of sunshine for those of us with family members who have MS. Sometimes I laugh out loud at your posts! You are a remarkable person.

  19. Jameelah Burnett says:

    My 4th grade teacher had MS and she always had this look on her face of silent suffering…….i had no clue what MS even was back then…….now I wish I could go back and hug her and tell her I understand.

  20. Stacy Neuman says:

    My friend, yes the world of progressive MS is a different road than others and as a fellow traveler I understand well,I am having a rough battle as of late myself.Know you aren’t alone and I cherish your lifting us up while you struggle yourself… You are much loved ❤️❤️❤️❤️

  21. Marie Caruso says:

    Praying strength and hugs to you sweetie. We truly care for you and appreciate everything you do to lift us up and help us to stay emotionally strong. Praying over abundant amount of love and compassion, strength of mind and body for you

  22. Julie Mitchell Dilbeck says:

    Although I don’t have progressive MS, my doctor says mine is “aggressive.” I don’t like to think about the future too much.

    Here are a couple of scriptures that help me. I have a long list of them saved on my phone:

    …I have learned in whatever situation I am to be content. I know how to be brought low, and I know how to abound. In any and every circumstance, I have learned the secret of facing plenty and hunger, abundance and need. I can do all things through him who strengthens me. – Philippians 4:11-13

    So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. – 2 Corinthians 4:16-18

  23. Kathleen reardon
    Kathleen reardon says:

    Penelope you are not alone & it helps to know I also am not alone . The future is scary , but i’lol take each day the good Lord gives me .

  24. Wendy Aitken says:

    Thank you for telling it as it is- even though you’re having a tough time yourself, thinking of u
    It’s a harsh enough reality for us to face I wish those around us would actually listen and understand, feigning both actually irritates & hurts big time, not to mention their thoughtless words

  25. Mary Malone says:

    You’ve explained my symptoms to the T.My body hurts in unknown places some where different every day. You bet it’s hard trying to explain to your friends and loved ones. I don’t know if they don’t want to read up on it are just don’t care.That’s depressing all by itself for them not trying to understand what you may be going through.As for as myself I just got to where I just don’t care what people think. I live one day at a time. I let God take care of all the rest.Be strong and try to have a positive mind even if that’s possible. I swear sometimes I think Alzheimer’s is kicking in as well.Thats very frustrating.

  26. Joan
    Joan says:

    Reading your messages helps me to keep my life in perspective. I know I am so fortunate that I have not progressed anywhere near your trials and tribulations, but there are times I find myself getting frustrated at my own limitations. That is when I think of you and all your welcome messages – they keep me grounded and realistic. May God bless you and keep you strong!

  27. Penelope Miller says:

    I think about you often as you were my very first way to explain symptoms and in such a great funny way. Don’t ever loose hope, there are so many treatments coming down the pipeline and finally for “Progressive”. I truly believe there will be a treatment very soon that will help. Stay positive as you always have been. Yes it’s o.k to cry and not feel positive at all times, you have a right to your emotions. We’ll all here with you. xx

  28. Marie Paige says:

    This is exactly what I’m going through feel more with drawl them usual I have more pain in my body and just for my brain to cooperate with my body has been a challenge.

  29. Odette van Straalen says:

    Oh Penelope, I’m so sorry you’re going through such a hard time and for so long too. If I could, I would make you a cuppa, do your laundry, give you a big hug, offer my shoulder and sit down and listen to you while you bared your beautiful soul and felt better, even if only temporarily. I sincerely hope you start feeling stronger and happier

  30. shari
    shari says:

    I was thinking of you yesterday Penelope, just out of the blue I started wondering how you were and what a challenge you face every day. You may not be aware that you have been a huge inspiration for me, when I have a tough day, I think of you and aknowledge how much more challenging your days are and how you face them with such courage. You have touched so many lives through your writing, I just wonder how many are living fuller lives because of your words. I hope that you can feel the love people have for you and I also hope that you are able to find the help you need at this time, that friends will respond to to all the points you have made particularly no.4, it does get very tiring to have to ask for help all the time, for the very same thing, I often marvel at how blind people can be.
    I hope this day brings you joy & love and thank you for continuing to write.

  31. Christine Mcneill says:

    I’m so sorry you are not doing well at the moment . Every word in that paragraph is true I have progressive ms and every minute of every day is a struggle . I find there are only a few people who are really interested in” how you are doing” it’s just something ask for the sake of it and a few friends have surprised me in caring that I thought wouldn’t, but this not getting asked to things really upsets me . Yes I’m tired, yes I can barely walk , yes I sometimes don’t know my
    backside from my elbow! But I’m still me , this disease is robbing me of every thing but there’s one thing it won’t rob me of and that’s my dignity , all of us suffering this… We are still us !!!!! Somewhere In there hope everyone is doing well today ❤

  32. Christine Ping says:

    On holiday but finally realised I can’t walk along the seafront as I used to so had to hire a mobility scooter. Finally admitted to self that I actually did need help to go places I used to be able to walk to. Big hug ❤

  33. Amy Cassady says:

    Yes, it’s difficult to make people understand this disease no matter what level of it you have. I’ve lost lifelong friends who think I’ve abandoned life or any interest in them or our friendship. It’s selfish on so many levels, but you have to keep your head up and keep fighting. Even family members don’t truly get it sometimes. Stay close to the people who care enough to ask and try to understand….they are few and far between, I know. I’m so sorry you’ve had these bad months. You bring so much positivity to our little community that we all are guilty of forgetting you have “those” days and weeks.
    I’m praying for you! #MSsucks #FindaCureforMS

    • Paula Myers says:

      So true . People that said they would stand by you fade away because of your challenges. I have been called flaky because I try to make commitments and then fail because of MS

  34. Tolan Hoffman says:

    Thank you for posting this. When the onset took me out of academia and the classroom I tried to fight my way back because I thought I could beat it. However, after a major attack the downhill battle became worse and every day is a struggle; even when I think it will be a better day and stay positive. I truly appreciate your site, your motivation, the support network, and the laughs many of us share through the pain. It means the world.

  35. Sam M says:

    Needed this.. gave it a share, lost a friend over side effects of meds And not being able to make a important event 🙁 hard to deal with after the last 6mths iv had… we’re not alone and are some of the strongest ppl I know…

  36. Ella
    Ella says:

    Thank you for helping me understand what my partner is going through. It’s hard to be on the other side as well.

  37. Pam Dye
    Pam Dye says:

    Thanks for putting things in perspective for us. You know you are not alone I this. I try to keep as positive attitude as possible but sometimes those symptom reminders take over. Keep writing this column and remember– Your readers are here for you!

  38. Leslie Beaver says:

    We all have unique experiences. And I am personally enjoying a good spell. Undoubtedly helped by the pleasant fall weather. But saying things that were unintended? Oh yes, that is a reality. As are other manifestations of our MS. The physical is of course only one part of our reality. Hoping that today is a good day for you.

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