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One of the many things MS has changed in me is my feeling of being ‘connected’; to my family, friends, faith, grief and even my financial situation. I most often feel disconnected from all of these. I can remember how I should feel, but I don’t.

I’ve spent a lot of time thinking I’m a bad person because of this. With the help of a brilliant psychiatrist, a supportive husband, and many, many, hours of talking with my compassionate sister, I finally believe it’s not something lacking in me, it’s the MS. But knowing it, and feeling it are two different things.

Usually, I stumble (sometimes literally) through my day, not consciously thinking I have MS. Although the physical toll is always apparent, again, there’s a disconnect. It’s only when I ‘overdo’ (which unfortunately is easily done) or do something that’s well below my pre-MS standard, that I’m reminded I can no longer do the things I once could, or do them as well, or be completely pain-free.

Although I persist with my daily prayers, and still have conversations with God, I don’t ‘feel’ Him like I used to. I miss that connection.

When I do get emotional, it’s a big deal. A surprising sneak attack of anything from a peaceful happiness to debilitating grief. Anywhere from moments to days of ‘feeling’.

I’m happy to feel happy again. I quite like feeling annoyed or ticked off at something. The grief of losing my parents is fresh, like it just happened – and leaves me yearning for the disconnect to return.

But mostly, I’d just like to feel connected again. To share the world around me. I miss it.

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


  • msfitchick
    3 years ago

    It was so timely for me to read this blog today. I didn’t have the word for it, but disconnected is exactly how I feel. I have been fighting to find those connections and things I used to enjoy.
    Thank you for sharing.

  • KarenLoftus author
    3 years ago

    There’s a whole new range of words needed to describe things now. And lots of new words I create myself. And there are also ‘go arounds,’ like, “The thing that keeps things cool” (while air drawing a large box). Oh, the refrigerator.

  • Lori
    3 years ago

    I want to thank you for posting this. I have realized that I often feel disconnected. I find it very scary and sad. I have a six year old daughter and am afraid she can feel the disconnect. Sometimes I am happy, sometimes I am just so tired I can hardly function, but I also am being treated with chemo to prevent a relapse from my Leukemia and being treated with gammaglobulins because my immune system is so compromised from my iv chemo to get me into remission. So is it the MS or is my brain and body just tired? This article did help me to understand a little better, I will also continue with my daily prayers and be grateful for those times when my emotions sneak through and I feel connected.

  • KarenLoftus author
    3 years ago

    Oh, love, I’m so sorry for all you’re going through right now. You have an incredible amount on your plate. No wonder you’re tired.

    You should speak with your medical care teams. It could be the MS or chemo, or combination… Your medical professionals will be able to help you pinpoint the ‘why’. If it’s your current meds, hopefully you’ll be off them soon (or some of them.)

    But if it’s not meds – How to deal with it? It’s not easy but I’m glad you persist in prayer. Like the disease itself, the solutions to how we deal with these things is also ‘snowflake’. I have found a psychiatrist helpful (someone who can prescribe psychiatric meds – ‘talk therapy’ alone just doesn’t help me). I know it’s not for everyone, but it helps me.

    I wish you the very, very best.
    Love and prayers

  • TracyBelleLee
    3 years ago

    I can totally relate to this. When people say “MS doesn’t change who you are on the inside”! it makes me feel like I failed at MS. My mom used to say “so & so has MS but she just doesn’t let it stop her”. I must really be a failure at MS then! Brain damage changes your personality and ability to keep your emotions in perspective to the situation. My husband says that I say things in a mean voice (and I will be feeling like nothing is wrong)! I avoid people and conversations because I don’t trust myself. I have tried to “make connections” on other MS websites- no one responded or replied. Failed Again

  • KarenLoftus author
    3 years ago

    It’s not a failure, Tracy! We have MS. It does change us, inside and out.

    It’s called a ‘snowflake disease’ because while we may have Sx in common, it’s so individual. Hoorah for [insert name here]; glad he/she can do XYZ. Doesn’t mean you can, or any number of us.

    You are absolutely right about emotions vs. perspective. Just remember, that as we’ve become a stranger to ourselves, those around us see the same, pre-MS, person. It’s a learning curve for all of us. My husband had a phrase he used often (but not so often now, thank God!): “I didn’t even think of it being MS – you look like you.” It’s taken a few years for him to recognize I can look the same (for the most part), a lot of times, I act the same, speak the same – and then BOOM⚡️ ! Where did that come from? Oh yeah, I have MS.


    Take care.

  • lisalu
    3 years ago

    I understand this completely. I am pushing myself everyday to just enjoy the little things. But even that sometimes feels like, in your words….(I’m just not feeling it} Thank you for posting this!

  • KarenLoftus author
    3 years ago

    It’s just so odd, isn’t it? Going through the motions like an outsider to your own body.

    I pray for you, Lisa. I hope you’re doing ok.

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