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A woman looking into a three paneled mirror. She has two different reflections. One happy and one sad.

The Two Faces of Multiple Sclerosis

Your future was so bright. I knew you were going places. And I was coming with you. When your dreams came true, so did mine.

You were my best friend. We were one. You knew all my darkest secrets and told no one. We were so happy.

Then something happened. I changed. Gradually I became too tired to join in activities we once enjoyed. We stopped running in the park and going to the gym. I began walking with a limp and slurring my words.

Barely recognizable

When we looked in the mirror, you barely recognized me. I would sleep all day and isolate myself at night. The energetic person you knew all your life was replaced by a MonSter.

So we sought help. MRI. Blood test. Spinal tap. The diagnosis was in. The symptoms were all too familiar to the neurologist. And his words altered everything. That’s when I knew it was over. The results confirmed our ending. You were gone. I was gone.

I didn’t want to believe it

I understand change happens, but not this. I just didn’t want to believe it. I never thought you would ever leave me. Something like this happens to other people. Not us. Not me.

Just the other day we were having the time of our life. Now I can’t find you. You vanished. I didn’t even get to say goodbye. One day you were here and then you were gone. It’s hard to believe you’re really gone. I need you. I need me.

I can’t give up

In my heart, I know what I’m looking for may never return. But I can’t give up the possibility of reuniting. It’s just so difficult to function without you. My daily activities become impossible chores. And random tingling and numbness grow to be a norm.

They say hope is in the air, so I hold my breath wishing to see you. Wishing to feel your energy. Wishing that you would come back and make me whole again.

At night, visions of you appear in my dreams. When I wake you’re always gone. Those hallucinations haunt me. They make me feel like I’m dying a thousand times over.

A brief return

Then out of the blue, the other day, you came back for a visit. I could sense your presence that morning. So, I made plans. We walked around the mall and went shopping without getting tired. We ate lunch and saw a movie with friends. It was so much fun. Just like old times.

But maybe we did too much. Perhaps I pushed too hard. Once we got back home, I could feel you slipping away. I tried to hold on but I lost my grip on you.

Suddenly, I was all alone. Back wall walking around my apartment. Blaming myself for losing you again. I cried so much that day I almost drowned in my own tears.

A shadow of my former self

I began compartmentalizing my existence. Feeling helpless, as I became someone I didn’t recognize. A mere shadow of my former self. Dwelling on my past. Fighting bouts of fatigue and pain.

Exhausted, I laid motionless on my couch. No doubt an exacerbation was creeping up. I was tormented by the anguish of being abandoned. Deceived by my own body.

Wearing the frown of relapsing grief. Longing to restore the smile of remitting peace. Trying my best to be one complete person while navigating life with the two faces of multiple sclerosis.

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

Comments

  • SueK
    2 weeks ago

    Perhaps it’s because I’m getting older, but the last thing I want is to have my old self back. I have grown into this body. It may be a bit worn, but it is comfortable. My life may be quieter but it is a lot better than the grind of 9-5 work, chasing children around, chores and trying to keep up with household projects. Now I am retired (disability), have a grandchild to spoil and then send him home with his mom and dad, my husband and helps out around the house (I love the team approach) and instead of being the project doer, I am project manager. I am able to deal with all the MS symptoms as I watch friends slowly catch up thanks to aging. I see myself as a thriver, not a mere survivor. I reach out to others to share what I have learned through the school of hard knocks. Their gratitude brings sunshine to my days. So I gladly say goodbye to my old self. The wisdom and confidence I have developed over the years was well worth the trip.

  • Janus Galante moderator
    2 weeks ago

    SueK,
    thank you so much for lending your perspective on this story. It is very much appreciated and I am so happy that through the years you have gained some very valuable resources.
    It sounds as if you have a wonderful family that keeps you busy as well!
    All the best, Janus

  • JoyMarie
    2 weeks ago

    Just what a person needs to read! Thank you for being positive, greatfull and sharing we are still her for a purpose it may not be What we want but it’s not up to me to plan my life BUT to follow the journey that someone has for me and someone for me is God.
    Thank you again

  • Janus Galante moderator
    2 weeks ago

    Thank you JoyMarie.
    So glad that Nicole’s story spoke to you. It was very moving for sure.
    All the very best, Janus

  • Debbie
    2 months ago

    This is me. Although I am a bit far worse off and I have been in a wheelchair since ‘99 but my husband married me with in
    MS in December 2000, and in 2004 – 2015 still in wheelchair but in a mini remission. I could go go go, but there were some pars of myself dead to the old me. But I could go go go. My husband really never saw the needy MS me until 2016 and he has been working from home ever since. I so want my friend the old me 97 that could still work, drive, and write beautifully and not Chicken Scratch. I want me back

  • Shelby Comito moderator
    2 months ago

    I hear you @debsie97 You are not alone here. – Shelby, MultipleSclerosis.net Team Member

  • SherriLane
    4 months ago

    WELL SAID! I get it % I Was just crying the other day and feeling so betrayed, and angry, and sad (all @ once)… This helps put it into words. Thank you

  • Shelby Comito moderator
    4 months ago

    I’m so glad Nicole’s article helped put into words all that you’re feeling and going through @sherrilane. You are not alone
    – Shelby, MultipleSclerosis.net Team Member

  • Irishmar8
    4 months ago

    You spoke to my soul. I always ask family and friends to remember how I used to be not how I am now. I didn’t get bad symptoms until I was 56yrs old. So I had most of my life to be strong and be a rock to my family. I feel really bad for the younger MSers who never had experienced a fuller stronger life like I did. I still some feel mentally strong but physically I’m different. I have memories so strong of how my life used to be and I’m so thankful for so many healthy amazing years. Remember me as my best self, it still lurks within me,

  • lcal
    4 months ago

    Dearest Nicole
    Thank u for such a poignantly written piece.
    You have managed to put into words what I think most of us end up feeling.
    Suze comment resonated with me a-lot as I am in the same position. Ive thought long about how to handle tis and Ive often thought
    (not to be morbid) maybe having a funeral type
    thing for my old self would open up the space needed to accept and love my knew self. After 20years of saying tomorrow, or this afternoon will be better only to dissapoint myself and others. after 30 years of diseaseIts time to finally accept who I am now and live life becaiuse i’m missing life. anfd that I do know, is not then, now, or ever wiill be who I want to be. im open to thoughts?
    Lisacal

  • pippa
    4 months ago

    I wanted to add that you are an amazing writer and you have touched so many of us…..
    Keep writing.

  • Shelby Comito moderator
    4 months ago

    Thank you for sharing your kind feedback @pippa! I know Nicole will appreciate that so much!!
    – Shelby, MultipleSclerosis.net Team Member

  • pippa
    4 months ago

    “The Two Faces”……. an amazing article. Thank you
    I want to recommend a book to everyone out there..
    “MS and Your Feelings”
    by Allison Shadday, LCSW.
    The best and most honest book on my shelf.

  • BethSlusher
    4 months ago

    What a powerful article. I thought, in the beginning, that you were talking about a loved one. At the end of the article I knew you were- yourself. This is so apropos of what happens to us that it does feel like losing a loved one.

  • Shelby Comito moderator
    4 months ago

    Thanks so much for sharing your thoughts @bethslusher. The loss of oneself is so devasating, and yes, it does feel like losing a loved one. In that same light, it takes time to heal and rebuild strength. Sending you healing energy and support! – Shelby, MultipleSclerosis.net Team Member

  • chong61
    4 months ago

    Oh, Nicole it breaks my heart when MS dumps on a young person. So much life left to live just not as it was.

    I can tell you that I have had MS 20 years and am 77, which makes me sad for you. You will finally get a routine of just doing what you can and leaving the rest for another day. No, for over 20 years I have been very limited on commitments to my children and they finally know Mom has limitations. But, they still ask to take me to a ball game and climb bleachers and are upset when I say no.

    I fell and am in a wrist brace, but oh how happy I was I did not break a hip. So important since I live alone and my husband is deceased.

    Please take all the joy you can get and on your down times remember I care and I will be thinking about you.

  • Legsonstrike
    5 months ago

    Oh my God!! This is so me!! Thank you for writing this article, you rock!!

  • m.Todd
    5 months ago

    A new thing we came up with:
    I consider myself at times being steered by evilness.

    We refer to that as Mr E. So, to alert my wife, daughter, and son, I simply say to them: Mystery (Mr E) which alerts/warns them that my mood will soon be abnormal for a short time.

    Others nearby do not even notice that secret word…

  • m.Todd
    8 months ago

    I’m totally with you on this. I spend a of time trying to fend off my bad side. When my bad side takes over, my loved ones and friends try really hard to help and make sense of it. Unfortunately, their attempts to help end up being fuel for my bad side. I spend so much time trying to repair the relationship damages Mr Bad Side has inflicted.

    This all keeps me on the edge of suicidal… 🙁

  • Shelby Comito moderator
    8 months ago

    Hi @mtoddh, thank you so much for reaching out and sharing. I can’t imagine everything you’re going through but please just know there’s always someone who’s willing to listen and to hear you. If you ever feel like you need help, don’t hesitate to contact the National Suicide Prevention Hotline at 1-800-273-8255 or online at http://www.suicidepreventionlifeline.org/ or any local options such as medical professionals, counselors, or support groups. Also, the Multiple Sclerosis Association of America (MSAA) (https://mymsaa.org/msaa-help/helpline-chat/) can be a great resource for the MS community. We’re all thinking of you and here for you whenever you need. – Shelby, MultipleSclerosis.net Team Member

  • Contalita
    8 months ago

    Thank You! Nicole your story is so familiar to me, because it basically explains my 35 years with a lot of the the problems that come along before having a diagnosis of MS(my diagnosis what’s on February 5th of this year) Nicole the odd thing was I was aware of the changes I was having as early as 19yrs old, I’m now in the later yrs50. In the past and I still do feed a very healthy life since 15 years old I was a vegetarian and because of food allergies became vegan don’t drink or smoke I’ve always got a proper night’s sleep. at the time the way I coped what’s drinking lots of coffee of 8 to 10 cups a day(yes I could still have a decent night’s sleep)but; through the week I cried myself to do the things I needed to do earlier in my life College & my career all the time feeling that something was wrong and that perhaps doctors were missing it, so now I no the reason because, before knowing in the back of my mind I kept thinking is it just me? now having the diagnosis has definitely given me peace of mind and also has helped me refine my life goals in a more positive way( my personal best!) Nicole I hope more people visit not just this website but the continued to seek out information from official MS sites, because I have none so many people that complain about how they feel and now that I’m more aware of the symptoms caused by MS I can’t help thinking but maybe they should, if they haven’t already start to speak to a physician and hopefully they have to test that may be needed and then have an answer instead of walking around full of dread. Thanks, Nicole I hope they keep your article up for a while because; it definitely would help people that have felt so run down and once they have read your article and see that it mirrors their life, it will give them a starting point for more information☺.

  • Donna Steigleder moderator
    8 months ago

    @ Nicole Lemelle Just Wow. You did a great job and touched so many hearts with this peice Nicole. It’s obvious your words were inspired and poured out from deep within your very soul. Thank you so much from sharing. I am sure your words will be passed along to many more for a long time. Donna

  • Toddlius
    8 months ago

    Very well written; held my attention all the way through. I can totally relate.

  • Iforget1
    8 months ago

    Beautifully written piece. Thank you.

  • Bkboo
    8 months ago

    This article brought tears to my eyes…so soooo true! I keep looking for me, the old me and love when she visits but so sad when she leaves…

  • greert
    8 months ago

    Well written and so true x

  • freedom
    8 months ago

    Thank you.. You said it all. It is so hard to reconcile the. Two faces. Peace and love.

  • kleiney
    8 months ago

    “At night, visions of you appear in my dreams. When I wake you’re always gone. ”

    I can walk in my dreams…

    Fabulous, and saddening, prose. thank you.

  • ladyjeff00
    8 months ago

    This was such a beautiful piece. Thank you for expressing the daily struggle.

  • Selkie
    8 months ago

    So sad and oh so very true. I wish I had the eloquence to express myself the way you have. Xx PS I should explain that not only can I identify with this beautiful piece with my shadow side, but it is also what happened to my husband/best friend and our relationship and how he felt about me at the time. I remember trying to explain to him that “I” hadn’t changed, I was still ‘me – it was the way I interacted with the world that had changed. We parted for 6 months, but came back. He now works from home and has become a kind, caring, thoughtful and compassionate man who now works with me and not against me xx

  • Shelby Comito moderator
    8 months ago

    I think you add such a poignant layer onto Nicole’s piece, @Selkie – how this same grief affects one’s significant other as well. Thank you so much for taking the to share a bit of your story. I’m glad to hear that you have your husband’s compassionate and comparing support. We’re here for you both! – Shelby, MultipleSclerosis.net Team Member

  • Bkboo
    8 months ago

    People need to learn about MS who have love ones, I think they learn best my MS’ers and these writings. Glad he is there for you!

  • Selkie
    8 months ago

    So sad and oh so very true. I wish I had the eloquence to express myself the way you have. Xx

  • kerste
    8 months ago

    blimey….since diagnosis last year ,and now started ocrevus infusions i have not felt so moved …to tears because of how you discribe what i could not put into words

  • aaosnana
    8 months ago

    Thank you so much for this article! It reflects so well what I (and obviously others!) experience often. It’d not a club any of us would choose to join, but it’s nice to know we’re not alone!

  • pmdpeace
    8 months ago

    Nicole, My tears are still flowing. As I read your words, it was if I had written them. Thank you for putting your, my and many MSer’s feelings into words. You have a gift… keep writing!!! Pam

  • Jamielee
    8 months ago

    Wow! Thank you for sharing your story! I have thought, said, those same words! It is good to know that I’m not the only one missing my “other self and dear friend.” When I have a moment and believe me there are many, I don’t give up and press forward!
    So here’s to fighting the
    MonSter!

  • StephanieEVC
    8 months ago

    Beautifully written and factual. I’m impressed with the wording of it all. Most times thinking about 1 thing a twitch spasm hits and I loose the thought. English and spelling are and were low grade subjects and not the most important parts as long as my reading was good.

  • Suze
    8 months ago

    This is the first article written by a person suffering from MS that I completely identified with. By the third paragraph, I was reduced to uncontrollable tears and had to collect myself before continuing.

    Since transitioning to SPMS, I feel like I died and someone else is walking (or trying to walk) around in my body, living some disabled person’s life that is not mine anymore. I miss myself so much! And it hurts.

  • Shelby Comito moderator
    8 months ago

    Thank you so much for taking the time to share your thoughts @suze. It pains me to hear how relatable this is for you, but I hope it’s at the very least, a little bit comforting to know you’re not the only one, as you can also see by the many comments here. This community is here for you and you’re in our hearts. – Shelby, MultipleSclerosis.net Team Member

  • Lori Kiker
    8 months ago

    This was brilliant! You so captured everything I feel! Keep up the good work!

    Lori Kiker

  • ss46sh
    8 months ago

    As my former mind set of “when you see something that needs to be done” also begins to fade, i find myself watching my children doing the seasonal activities i used to do. Sure there are times i slip in and help but watching them do for me what i did for them for years is rewarding. I still fight my MonSter too. Somedays like you i do too much and then need extra time.for recharging. We can only do what our own MonSter will let us do. Stay MS strong.

  • New to me
    8 months ago

    Thank you for sharing! Not the kind of “club” we want to be a member of, I so never want a “good day” to end! I stopped putting things off until I have a good day, they are far and few these days, Hang in there, adapt and forge ahead my friend

  • Lisa
    8 months ago

    Nicole – Thank you so much for sharing this amazing article. Your words are beautiful and heartfelt.

  • Theresa
    8 months ago

    Nicole – this was exquisitely written to express the “loss of self” for which the MonSter is responsible and so delights in stealing. The words you have empowered yourself to write show that while our lives might be a MonSter mess, we are a beautiful mess. And the difference between the two might be a thin line sometimes….but to us, that thin line can make a world of difference. ❤️

  • Ana Miguel
    8 months ago

    Sometimes, being all alone is unbearable due to these thoughts that take my voice away and fill my eyes with tears.
    Thank you for sharing your beautiful words, @Nicole *

  • zeus73
    8 months ago

    Nicole, Nicole, Nicole. As I sit today counting and recounting stitches on my knitting needle, I dread standing up because my knees are in lockdown for another day. Standing requires such focus that I might forget why I need to stand. Oh. I need to refill my glass of water. Such a simple thing, you know? I guess you know. And THANK YOU for reminding me that it’s okay to think of and celebrate the other part of me, my true spirit. She lives in light. As I’m older now, I know and accept that I live in her shadow. Like the wind beneath my wings. But I still need to remember that she is inside my heart and, like you, I do miss her.

  • Shelby Comito moderator
    8 months ago

    Such beautiful and heartbreaking sentiments, @zeus73! Thank you so much for taking the time to comment. This community is here for you – on both the light and shadow days. Thinking of you, Shelby, MultipleSclerosis.net Team Member

  • Warrior73
    8 months ago

    I love the way you tell are story. Stay strong, you are a warrior! I didn’t get diagnosed for 20 + years later. It was in my head, The numbness, tingling, dizziness, ect. Take care

  • Warrior73
    8 months ago

    Sorry memory issues, nothing stays the same. That is life though

  • DeBe
    8 months ago

    I keep telling my loved ones, “I feel like a shadow of my former self.” Not sure they understand, or maybe they understand too well. I never get a response.
    Your piece resonated with me. So, thank you! I feel normal now. (Well, at least my new normal. LOL!)

  • Shelby Comito moderator
    8 months ago

    Thank you so much for taking the time to share @debe. I’m so glad – and yet also so sad – that this piece resonated with you so deeply. Sometimes our community member find it helpful to share our advocates’ articles with family members and friends to help put words to the daily struggle of MS – perhaps it could be helpful for you as well? Just an idea! We’re thinking of you and and please know you are always normal here 🙂 – Shelby, MultipleSclerosis.net Team Member

  • shim
    8 months ago

    All I can say is Fight, Fight and Fight more with all you have. Don’t become your disease, don’t let it define who you are.

    I try to give it limited space in my mind regardless of what it’s stolen from me in the past or what it’s trying to currently do.

    FIGHT!!!

  • bearsocks1
    8 months ago

    Nicole, Thank you.

  • Arianna1277
    8 months ago

    I read these articles about MS all the time. This is the first one that touched me and really felt like the grief of MS was explained. Thank you for writing this. It is beautiful and poignant.

  • Lisa Schlecht
    8 months ago

    I completely agree. I have never read an article that I “felt” and related to quite as much as this one. Thank you.

  • Shelby Comito moderator
    8 months ago

    I’m so glad Nicole’s article resonated with you, @Adrianna1277, and really appreciate you taking the time to share your kind words and thoughts here. We’re grateful to have you in our community. – Shelby, MultipleSclerosis.net Team Member

  • patafan765
    8 months ago

    I read this article and it was good . I feel the same way sometimes. Stuck . A year ago I was working 24-30 hr a weekend on an ambulance and took care of my kids during the week . Now fast forward to a year later and I’ve moved to another state and to a more handicap adaptable house . Going to rehab again . Getting around better but I do feel stuck sometimes.

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