Multiple Sclerosis can be a lonely disease

I don’t think the world will ever understand that we don’t need their unfounded, unproven, misinformed opinions or their self-help miracle cures, mineral water and diet plans. We simply want to know that they care. Yes, it really is that simple. A kind word, a smile, a helping hand…you’d be amazed at just how much they actually help get us through the difficult times.

We want to stop being looked at as if we are a green martian when we park in a disabled parking spot at the store because we look too young and healthy to need it. We want people to be considerate when we struggle opening a door they so conveniently rushed through only seconds before. We want a chance to rest in the afternoon without being thought of as lazy. We want to be invited out with everyone else for lunch or an evening of fun even if we have to turn down the invitation later.

Multiple sclerosis can be a lonely disease. It can isolate you especially when your mobility decreases giving you fewer options for socializing and interacting with the world around you. The internet helps to bring people into your world but online avatars, screen names and hashtags can only do so much.

When you find yourself having a down day filled with loneliness, tears and a loss of hope that anything will ever get better, don’t lose heart. You are truly not alone. My struggle may be different than yours, but I understand the depths of despair that happen because of a disease that has taken over and altered my world in ways I never thought possible.

All those hurtful comments people make and those misunderstood words of advice from well meaning friends, if they are not helpful toss them to the side. Don’t hold on to anything that pulls you down whether that be a thought, words or even a person.

I have found that if I allow someone to speak their opinion, it leaves them happy to have contributed to my life…even if their advice is so full of holes that it wouldn’t hold a teaspoon of water, but once they say what they have to say, I let it go. I have to or I would go bonkers.

Let go of all the junk you have been holding on to—those things that weigh you down and that people have spoken about you or to you that do no good. They’re not worth carrying around. The only thing you need to be carrying is your head…carried high.

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.

52 replies
  1. Paul B Hammerich says:

    It is such a lonely disease. It separates one from his or her friends and most disheartening of all family. It is a loneliness that penetrates one’s soul. This has happened to me. I know that others here try to keep my sprits up with phases like ” hang in there”, I know that others are trying to help me feel better but when my family stated that they can’t help me I don’t know anymore. Lucky for me I am in a rehabilitation hospital. Although there are people here it is still not being at home. My family does not visit me (I am located one block from my home) Maybe it is the heat out here but I feel like giving up. I just don’t know

  2. Val Hanna says:

    It’s the easiest way u communicate a smile or hi but people want to force feed you their cures, or diet plans or exercise plans that will turn us into robocops but I just want to chat about something completely unrelated to the lurgy (MS) cos I’m sick of docs and nurses in my bedroom. Talk about Rugby or Corrie or whatever please please please please please please please please.

  3. Christine McCarthy says:

    I had a wonderful loving supportive hubby of 37 yrs – who died 5 1/2 yrs ago from a brain tumor. My MS was very helpful in knowing how to help us deal with his mental and physical challenges…. serendipitous – I miss the life we had….but we were

    • Christine McCarthy says:

      I often need isolation, R&R for a few days before wanting to be around other…mine is situational, or clinical depression – and sometimes it just MS…god bless. 🙏

  4. Mayra Michaud says:

    This is ABSOLUTELY % TRUE! It’s difficult to plan activities, events or outings because you really don’t know how you’re going to feel on any given day or even moment!
    I’ll have a day of ZERO activity, just relaxing, and I’ll feel just fine. The next day, I might barely be able to get out of bed for a pre-planned event.

  5. Patti Saul Gross says:

    Suffering through health problems, physical or mental, sometime leave others speechless. Just know that your loved ones, are just that. They always love you, even if they don’t say it. Sending positivity your way.

  6. Kris Tymchyshyn says:

    I’ve said this to you on so many occasions that you inspire me all around! I always look for your posts when im falling apart and you always convince me to stay strong! You are a beautiful soul!

  7. Sam
    Sam says:

    Thank you, thank you. Brilliant piece. I struggle not to smack down the well-meant “advice”, and I struggle with the solitude fatigue causes. Thanks again

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

    Another good message Penelope. I have met another person with MS at the respite center I am at, and we have had a good discussion about communication. To often people don’t know how we fell because we don’t tell them. I know this can’t be done all the time but if it is available to do don’t hesitate, let them know what you are going through at the moment. This information is vital to help you get help and pass on real feelings to stop any misinformation about the way you are affected.

  9. KT
    KT says:

    I had an infusion today and actually had an older woman getting one also say that I looked way too young and healthy to be needing to be back there…???!!! Maybe it was not meant that way, but I had already been through steroids all week for a relapse that did no good and was NOT in the mood. Just because I am younger than a lot of others there and not on a walker yet does NOT mean I don’t have any symptoms at all. I’m choosing to look at it as a reminder that even other msers can be judgemental and assuming and never let myself be that person

  10. Tiffany Lanthier
    Tiffany Lanthier says:

    Penelope you so ROCK 😘😘 you always say the right thing at the exact right time for me, so a BIG Thank You and many hugs your way XOXOX 😘
    This disease sucks but being positive is what it’s all about… We can and we will do this!!! A BIG HUG to everyone today 😘

  11. Dave N JJ Sharon says:

    Thank you, thank you, thank You! I had this conversation last night with my mom. I try to stay as positive as possible, but……I do get sick n tired of not going a day without pain, the struggle of tiring so quickly when you’re trying to accomplish whatever it is that are the necessities to be done, planning EVERYDAY according to your body, AND……the isolation that comes with all of that.
    Thanks Penelope, for your great gift of being able to express these feelings, the reality of this debilitating disease and the wisdom you share through writing. 😉 ♡

  12. Aileen Brown says:

    I have loads of people I know but few real friends who mostly have been there for years and most of us have something wrong so we are able to support one another and have a laugh about our illnesses but I know I am very lucky one of my friends who has a neurological condition and needs a wheelchair to get out and about has been accused by her own family as attention seeking and now has no contact with them which is sad

  13. Geraldine Lowrey says:

    Went to a park with rides, food, music, near the lake. My husband was a total angel, pushing my wheelchair over bumpy grass. I only use it when I can’t walk great distances. I felt bad for him, pushing in the hot sun. He went away then came back with a Sno-Kone! Haven’t had one since I was a kid. It was better than ice cream or any dessert. He said he thought that’s what I would need, told me to stop worrying about him and just have a good time. Sometimes he knows better than me what I need.

  14. Clive Whiteside says:

    As always Penelope you make a great point this is a fantastic article and we are sure that many people with MS will be able to relate to what you say. Thank you for all your amazing posts that help so many of us take care Clive xx

  15. Laurie
    Laurie says:

    Thank you again Penelope. Your words always seem to be exactly what I need to hear at the right time. I am going through what feels like isolation, as well as an ocean’s worth of “advice” right now. I found out one week ago that my Copaxone is not working after 2 years of being on it. I have been diagnosed only 2 years ago, and I now have to make the choice between 4 other medications, with much more serious side effects, and everyone around me seems to “know what’s best for me” or ” just choose this one” or I have even heard “it’s no big deal, that I should be lucky I have choices and options”
    It feels extremely isolating, and trying to hold my head high when I am worried about what is happening inside me along with the realization that things are not going as well as I had assumed is hard to do among the hundred’s of things people say to you every day. I thank you for always being there and for giving me courage when I didn’t think I could find any. Your words truly mean the world to me, so thank you from the bottom of my heart

    • Holly
      Holly says:

      hi honey first big bear hugs. i too about 7 years ago had to make the same decision as you…
      choose another med. was on betaseron, stopped by working after 2 years. not to much to choose from then. it was discussed in detail with my neuro, now on tysarbri. its going on 6 years alls well. you r blessed with choices. you will be guided to one. ya know what?! if that doesn’t work, try another. it will work out– pinkie promise lol thats a serious promise ask my son.
      more hugs– take care xo

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