The ugly side of Multiple Sclerosis

Most people don’t wake up one day and decide, “Hey, I want to be needy.” I’m sure you’ve had a friend at some point over the years that drained you emotionally, if not financially as well as in other ways, by being too dependent on you…too needy. And since you’ve personally felt the exhaustion and weariness that kind of neediness carries with it, you have determined to not be that person.

You may have even made a personal vow to keep your problems, emotions and financial needs to yourself. You don’t want to be THAT person…the one who drains the energy out of others. You don’t want to be a burden.

Can I share with you a little bit from my heart?

We were born with needs and will always have needs. We need one another to help us through, not just the fun times but the bad as well. It’s okay to admit a need. It’s actually healthy. We were never meant to be self-sufficient, do it by myself, never ask for help people.

When you need help…it’s okay to admit that need. That’s why we have people in our life, whether they are family or friends, that are there to support us, stand with us, help us, strengthen us, and hold us up when we don’t have the strength to stand by ourself.

Don’t shut people out simply because you have a need. The world is full of broken people who remain that way all because they can’t admit they need help. One thing Multiple Sclerosis has done in my life is forced me to lay down my pride. And when I say forced, I really mean that. It has forced me to admit I have needs.

I can’t get through my day without help from others. Over time I have discovered that my needs are not the burden I assumed they were. Sure, I don’t want to have needs…no one does. I don’t like the fact that I can’t function without help. That’s the ugly side of MS. That’s the part no one likes to talk about.

Sure, it’s great telling others that MS isn’t really all that bad and that being positive is all you need, but as the disease progresses and your functionality decreases you begin to experience the disabling things that no one is really talking about.

The times when you poop in your pants and pee on yourself all because you couldn’t get to the bathroom in time, then spent the rest of the day cleaning it all up…exhausted and weary. Or the times when your breathing scares you as you gasp for air uncertain as to whether you will be able get through the next few seconds without choking. Or when the pain is so overwhelming you don’t even have the strength to cry.

Those are the ugly things people don’t talk much about. And that’s just a few of the things that happen with MS. It’s important to acknowledge the struggle and talk about the hard stuff instead of stuffing everything inside and thinking you are being a burden. You are not a burden. You are a person living with MS who has a need. And it’s okay to have needs.

MS is ugly. It’s hard. It’s nasty. It’s disabling. And you…you are a person with a progressive disease who has a need, and it’s okay to have needs. I wish more people would talk about the struggle so the world could understand that MS isn’t the smiling face walking to raise money for research. It’s so much more than that. So much more.

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.

49 replies
  1. Catherine
    Catherine says:

    Thank you, I really mean that. When I started reading these stories on your web page it brought tears to my eyes, I thought as we all do, no one understands. I have been suffering in silence for 19 years always putting a smile on my face. I have had MS for 19 years, and when I changed my neurologist and he met for the first time 4 years ago, he could not believe I had MS and thought I was wrongly diagnosed because I was walking into he’s office with high heels, not until further testing and he was so surprised, because he could not see any physical signs of the disease, obviously he got me on a good day. He asked how have I maintained the disease without being on medication, all I told him is I try to stay positive and I am grateful that I have MS, I wasn’t dying, this was my path and I could only leave it up to GOD. People thought I was crazy to think that way. But being positive makes a huge impact on what happens next. I am a firm believer that it does work, sure I still have bad days, and it’s hard to function but those days I just try a push a little harder. The hardest thing I find living with MS is because people can’t see the physical signs they think nothing is wrong and those days I truely feel alone. I call it suffering in silence, so thank you for creating this site. More awareness and education needs to be out there

  2. Jackie
    Jackie says:

    Thank you for sharing Penelope, you are an amazing woman. I hear what you saying sometimes I also just cry, at least we can all talk to each other but you right people do need to know what we go through.
    You have a lovely day now

  3. Chris
    Chris says:

    Thank you again Penelope! You are such an inspiration and yes, we all love reading your words! I hope you are inspired and can feel the love from all of us in the comments from this article especially. You ROCK my dear and we are blessed by you!

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

    I have needs that sometimes I can’t get across but I have people around me that help when I can’t ask for it and gratefully receive it.

    Just a little aside. Our local paper had an article that caught my wife’s’ doctor about a MS drug. The two drugs are dimethyl furnarate(Tecficlera) and teriflomide(Aubagio0. They are both MS medical drugs and our Phamac business is looking to fund it to make it possible to get it easily. Check it out you may be surprised.

    Thanks for all you messages Penelope they are very helpful for my life.

  5. Kathy Buys says:

    Thank you for sharing your thoughts. I’m not patient being a patient–explanations are difficult when having an excacerbation. After 26+ yrs with MS, I still feel isolated many days. As I write this I realize today isn’t a good time, maybe tomorrow.

  6. Heather Adsit says:

    It’s so true.
    It’s hard to ask for help.

    When you get labeled disabled at 30 because drs say your crazy and then you get told fibromyalgia. Loos jobs … no one wants you to work because you pass out or leg goes.

    I’ve never really had much help.
    Every time I ask now that I’m a mom and I’m diagnosed with MS…. I get told.
    “Well you shouldn’t have had kids.”


    “Sure you can have help. Give up your kids to the government and you can live in the streets.”

    Some people can be harsh.

    I tend to push myself because I here those words in my head and I feel I can’t ask for help.

    I’ve been remodeling my home and setting it up for my MS needs for 1& 1/2 yrs already :/

    It’s takes forever alone.
    I know I need help but there isn’t really any.
    I do have my husband and kids smile and that helps 🙂

    On a positive note 🙂 I may be slow on some things… but I feel so good… not physically but mentally 🙂 … I’m doing it 🙂

    I am very thankful I can still get around.
    It tires me…. I get dizzy.. fall… but knowing there is others who can’t walk at all.

    I know I could have it worse 🙂

    Wish more people where kind like you Penelope 🙂
    This post at least acknowledges how hard it is without help and it’s ok 🙂

    Just hearing someone say it can be hard… that’s comfort 🙂

  7. Lori Grace says:

    Thanks for the article. I try to share your posts, not only for myself at a time when I need to go back and reread them, but so others will maybe have some small hint of what I go through on a daily basis. Asking for help is not easy. Still trying to do as much myself as possible, and some of the things I can’t do seem petty. I guess I feel it is easier to find another temporary solution than to ask for help.

  8. Henry
    Henry says:

    MS effects so many people in different ways. Yes I am mobile. Other people are confined to a wheelchair. We need a cure for MS. Pray for a cure!

  9. Carol Wroblewski says:

    I can only imagine how hard it is….having been disabled for only a short period of time with a fractured leg non-weightbearing….that alone was not easy. I had to be dependent on my husband. It opened my eyes to other peoples disabilities and how difficult it is

  10. Nancy Jones
    Nancy Jones says:

    Wow. Penelope, as I sit here and meditate on your words today I am struck by your selflessness, the way you give of yourself to everyone through your writing. My morning readings from you are a need. I don’t know how you do it. It would take me hours to get the words out correctly, not because my fingers are dysfunctional but because my brain stops thinking cognitively and the words don’t flow so freely. Your words enlighten, inform and empower better than any I have seen. Thank you for supplying that voice and need to all of us who are struggling along with you. I continue to look forward to my morning dose Positive Living with MS all the while knowing that it must be a struggle for you at times to communicate those thoughts to all of us. Thank you for being the one to fulfill that need for us.

    • Penelope Conway
      Penelope Conway says:

      Thank you Nancy for you kind words. I am reading them in tears today. Not tears of sorrow, but of thankfulness that my words, my struggle, my life, can inspire and help others. You have no idea how many day I have wanted to just roll over in bed and not write a word, but then I think of the countless numbers of people that need me…and so I write in hopes that even just one person will be touched. xoxo

      • bridget feikert
        bridget feikert says:

        you and your words are very much needed!!!!!!! and appreciated!!!!! thank you for sharing!!!!!

  11. Jill Kealey says:

    People who don’t live everyday with having Ms…Really will never understand how it is and how you struggle doing the little of things. It does change your life but my fience Michael and has been with me from the start, in 2004.. He’s the best.

  12. Zoe Cox says:

    I would like everyone that knows me to read this……all the ones that search my face and tell themselves that it’s fine coz she still looks ok and she’s not crying yet so I don’t need to do anything yet.
    I would like to know how anyone copes with realising that their job is too tough for them but the money is still needed ? At what point do you tell your loved ones and others that the time has come? And why can you only get financial help when you can no longer manage rather than being supported to try and carry on at a slower pace but still in control and earning a bit?????? I’m normally really positive but it’s left me lately as I’ve got worse and been told that I’ve to start DMM’s as its active in my brain at the moment. What joy!!!!! X

  13. Barbara
    Barbara says:

    Thank you Penelope . You nicely summed up some real truths about this disease and its effects on people living with the disease. I am learning to ask for help without feeling embarrassed. I am also learning to accept help when provided and not feel like a burden. As the disease progresses I have to recognize my limitations and find my peace. I also realize that some people like to help you if you need it and I should not feel shame to ask for help.

  14. Christine O'Sullivan says:

    Thank you once again Penelope, one of most difficult challenges with MS has been admitting I need help. Am maintaining independance by making my own decisions about my needs and asking for the help I need – an on-going journey 🙂

  15. Christine
    Christine says:

    These are very good words – thank you again Penelope. Being dependant on others is one of my on-going “challenges” and one strategy I use is to make my own decisions about my needs and how I am going to meet these (what help I need and from whom). Helps me maintain my independence and I am finding that people really enjoy my asking for help for specific things 🙂

  16. Julie Haines Hoddes says:

    Penelope, I don’t know how you do it. How you manage so often to come up with words that describe exactly how I’m feeling. I need this because very selfishly, I don’t want to be on my own. Sharing your words is educating my family & friends too, helping them to understand what this grumpy, miserable cow is going through. I smile a lot on the outside but what’s happening on the inside is devastating, and people only see the smile. Your posts make me feel like a better person, so thank you from the bottom of my heart for them

    • Val Hanna says:

      It’s exactly right, to hear that someone else feels that way is good because I thought that it was just me. I know it’s not but my head sometimes says it must be just me. Even in front of people that should understand I just know they haven’t been clue. You look well they say..But inside me there’s a battle raging between spasms, pain just all sorts of MS that only we know. If they could step inside our skins for 1 minute they would jump out and run for the hills, they don’t know why I smile and just never say anything!!

    • Julie Haines Hoddes says:

      It’s not that we want other people to be struggling, we just don’t want to be alone. It’s good to know other people, even if they’re strangers on the Internet, understand and can empathise with what we go through. I think people tell us we look well because there’s nothing else to say!! Xx

    • Val Hanna says:

      Julie Haines Hoddes exactly there is nothing else anyone can say because there isn’t even anything anyone can do. We are our best supporters and we can support each other cos we know what it’s like.

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