Things I wish more people understood about Multiple Sclerosis

Lately 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 I have cried more than usual, lost my temper for seemingly stupid and even unknown reasons, and become more withdrawn than I ever thought possible simply because my body and brain won’t cooperate.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 amount 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 tougher 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 still confuse things.

23 replies
  1. Emma Hall
    Emma Hall says:

    Having trouble. with my memory is s real bummer. Get so tired of hearing; “you repeat yourself way too much”. And, “you’re not trying hard enough, there’s ways to adapt your not even trying” Coming from sumone who has no clue about MS.

  2. Katrina Dalehite
    Katrina Dalehite says:

    Thank you Penelope for your honesty about M.S.! Major hugs and encouragement to you today and always!!

  3. Sassa Donti
    Sassa Donti says:

    Such a well written and useful text! I sent it to my closest people, and translated it in greek for my ms group. Bravo, Penelope!

  4. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Thanks Penelope you have a great honesty and not afraid to tell us what you are going through.
    I am pleased that I have, many years ago, found a site called Tickle and they do an IQ tests from a range of books and previous test to set a bench line and set you against others who sit them You will never know who sat them or where they are but I have found that you can trust them.
    From the tests I have found out I have a moderate IQ of 129 which is ok. But I sat an emotion test and from that I have an emotion IQ of 141 which is why I can deal with all sorts of problems and this has been very good to deal with MS. The one thing it does to me is I don’t cry, get angry, or have any other strong emotion feelings to show. But it doesn’t mean I don’y know what you are going through, in fact I know very well what is, but I can’t feel it within me. Just as a side line, I sat these tests after several years of getting MS and that was a God sent. So please don’t stop telling your story it helps me more than you would ever know.

  5. Roland Clarke
    Roland Clarke says:

    My thoughts are with you as this so echoes my current state of health. My blessings for ease in your struggles.

    • Rhoda Patterson
      Rhoda Patterson says:

      Thankyou Rhona you have said exactly as I have been thinking. I have RRMS and all Penelope has written applies to me also. Chin up and keep smiling 😊

  6. Rhona Kingett
    Rhona Kingett says:

    Thank you again for saying exactly what I was feeling and needed. You’ve covered a lot of instances but as part of points 4 and 6 I do get upset when people ask me what I want. I’m aching to scream out that I want to be able to control my body and do things myself. However I can’t as people are genuinely wonderful and helping me.

  7. Tiffany
    Tiffany says:

    THANK YOU once again what I wanted my family to know again!!! Only the ones with MS seem to understand and actually get it 🙂 Have a WONDERFUL and AMAZING DAY Penelope HUGE HUGS your way my friend…

  8. Mary
    Mary says:

    Thanks for explaining once again what everyone needs to hear about this disease. Just once instead of “oh it can’t be that bad” or “I’m sure it’s gonna get better”, I would like to hear “it’s horrible, I don’t know how you take it everyday and still manage to go on. You should recognize that the fac you can get out of bed everyday is a HUGE accomplishment”. That’s what I need to hear.

  9. Carla L Broadbent Rogers
    Carla L Broadbent Rogers says:

    When your words find the page, they are true and honest. Be well. For all the Moms..Happy Mother’s Day.

  10. Vicky
    Vicky says:

    No 6 is my fav. If more people thot to just come by and say “hi” or take the trash out for me wud be like a million times more helpful than anything else. Its truly the little things that make the biggest difference

  11. Peggy
    Peggy says:

    Again Penelope Conway THANK YOu…you are gifted my freind. Saying exactly what we feel. A HUG from me.

  12. Paula
    Paula says:

    Perfectly explained / expressed in a way I never can, I was so impressed I have forwarded this on to several family members. Thank you very much, hope you are having a good day yourself

  13. Charlene Mellon
    Charlene Mellon says:

    I have been posting similar on Facebook this week, I want people to understand MS, it’s many invisible symptoms and their limitations. Penelope you have given me the will to raise awareness.

  14. Nick
    Nick says:

    Thank you so much for writing down what I have always wanted to say! It is important that our friends and family understand the emotional impact MS takes upon us (which can be worse than the physical).

    Take care of yourself and others.

  15. Bxx
    Bxx says:

    For me no 4. ..’.the burden I’ve become …and I can’t give back…’
    Penelope you articulate the depth of ‘our’ world. I feel I have found a soul sister xx. Never give up xx

  16. Jane
    Jane says:

    You expressed exactly what I’m feeling right now. I’ve not been in the best mood lately. Even though we don’t know each other – we are connected by a rotten disease that is only understood by others that are cursed with it. MS makes me feel lonely and misunderstood. I at least know you understand. 🙂 Thank you for sharing (written with tears in my eyes)

  17. Chris
    Chris says:

    Dear one, thank you for your honesty and perseverance! Your wisdom & words help us reach others with truth. Praying you have a day filled with JOY!

  18. Meeya
    Meeya says:

    Thanks again for sharing, and for being so honest about everything!
    My favourite for today: no.6 – the little things… For me, that was a very unexpected huge hug I got at work today…! 😂
    THANK YOU for being you, and for being there for us all!
    Wishing you a wonderful day full of hugs… 💓💞


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