a woman dancing while her shadow sits in a chair

Struggling To Be Perfect

As he drove the car, I stared out the window from the passenger seat. Daydreaming. Watching my life pass me by. Reflecting on everything I had voluntarily and involuntarily given up. Knowing I was about to surrender one more part of myself.

We were traveling to a party and I had agreed to be someone else. I have played this game before but this time it didn’t feel right.

Mentally steadying myself

Upon arrival, I mentally steadied myself. Before we exited the car, I placed my cane in the back seat. En route to the house, I stumbled three times on the sidewalk while trying to keep a normal walking pace. But luckily I made it safely without tumbling to the ground.

We met the host at the front door and she invited us in. As we crossed the threshold, I quickly grabbed my partner’s hand. It looked like a sign of love. But the truth is I did it for balance.

The front room of the house was full of fake friends making noise. And despite being surrounded by a group of people, at that moment, I felt so alone.

They only knew the lies

Everyone was a stranger to me. Not because I didn’t know them. It was because they didn’t know me. They only knew the lies. The lies he asked me to tell. The one’s that stopped me from being me. The one’s that hurt my spirit.

I’ve been dishonest so many times; my bright eyes have become dim. And when I’m in these situations, I don’t really smile. I don’t really laugh. I don’t really feel. I only concentrate on being inconspicuous. Trying not to let my foot drag. Pushing through fatigue. Giggling at jokes my cloudy mind doesn’t understand.

All the while he keeps whispering, “You are doing so good. You’re perfect.”

Eating me up inside

But every perfect moment is eating me up inside. I guess dancing with lies is more comfortable than sitting with the truth. So I bit my tongue and continued the deception.

As we trekked around the party, my strained smile greeted everyone I met. I answered each question with a mouth full of white lies. And despite the obvious evidence something was wrong, no one asked about my awkward lumbering walk. Everyone just played along. But I could read their faces. I memorized every wayward expression as I told them I was doing fine.

My companion needed to talk to someone in an upstairs room. So he asked me not to move from my current spot until he returned. I felt like a child being put in timeout and forbidden from leaving the corner. As he walked away, I immediately propped myself up against a partition. Once I was alone, I started regretting my decision to take part in such a sham. Making that agreement to hide my imperfections was like drinking poison. And the effects were beginning to influence me. I was becoming nauseous as I leaned against that wall watching my fabricated stories travel from person to person around the room.

Lying hurts

But a part of me understands why he asked me to do it. I recognize, at any moment I can become an embarrassment. I know I can’t be trusted. I don’t always make rational decisions. In an instant, I could misstep and collide with a door. Run into a wall. Slip and fall face first onto the floor. Ruining the image he created. Destroying the fairy tale life his family and friends believe we live.

So that’s why I try my best to keep our secret. But it still hurts.

I made it through the night without any major mistakes. And as we were driving home my boyfriend said to me, “Thank you. You were perfect.”

I just kept my eyes forward and gave a halfhearted smile. A great sadness filled the car as I wondered if he really thought I was perfect. Or was he talking about the person I was pretending to be?

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

View Comments (34)
  • crzyallday
    7 months ago

    Beautifully written. I thank the Lord that it never occurred to me not to face the truth. For sure, hated it but didn’t know I could deny it. MS took so much from me and continues to but I have been given the gift of laughter and that sustains me even in the darkest of days. Every time a new thing is taken away the saying “it is what it is” helps me to eventually accept the unacceptable. I have many people come to me and say I’ve helped them with my strength, perserverance, etc and so I feel joy that I have been able to inspire someone. If this disease and my reaction to the disease helps someone’s journey a little easier then it’s all good.

  • Azjackie
    7 months ago

    This is me. I don’t think so much about being perfect. That will never happen because no one is perfect. I think it is about being common. I like to fit in rather than stand out. Among other things this hellish disease has made me synical and bitter. Once I was funny at parties now I feel that is a performance. Don t get me wrong I am polite and kind but inside suffering terribly.

  • RuthGeller
    7 months ago

    In writing your friends story, you tell a sad tale. And as a person with MS I can sympathize about not being who I would like to be. But I think your friend should be developing relationships, friendships and interactions with people who value her for the person she is. As someone who has had MS for many years; tell her I care; tell her I know; tell her she is not defined by this debilitating disease.

  • lpoole
    7 months ago

    Hi Nicole,
    I am so glad that you told this story to get that feeling exposed. Back in early 2000 my symptoms had gotten worse and to the point where I used a wheelchair all the time. The more that my disability showed , the less my (at the time) husband took me out. This was after being married for 15 years. I struggled with this for a time along with other mariatel problems now I am single and don’t have that emotional problem. I must say after having this for 35 years I can still walk with a walker but have to use the chair out, and I am still going strong.

  • rayche
    7 months ago

    Thankyou for clarification Nicole. A moving story. Sometimes the EA and the MS prove too much for me in combi,and I am very grateful to be aware of the inner strength that is there(we all have it). Please pass on info from my previous post to your friend, when there is doubt,investigation is required.All the best to you.

  • Sherry
    7 months ago

    I think it sounds like he was talking of the person you were pretending to be. I used to pretend (for reasons of vanity), but there may (or may not) come a time where you just can’t pretend any longer. My body won’t let me now.

  • Jan
    7 months ago

    Nicole, kudos to you for an excellent article.

    I think that we who have MS totally understand. And sorry for all that we do.

  • Nicole Lemelle author
    7 months ago

    The man described in the story is not my husband. I wrote this post because I hoped someone could relate. It is about one of my friends. She feels trapped in her relationship because of her disabilities. She told this story to me and I was so touched. I can not relate to everything she is going through. But I can relate to hiding my diagnosis and symptoms. I did it for years.

  • rayche
    7 months ago

    Your story in essence is scarily common Nicole. I was diagnosed about 20 years ago.In denial for as long as possible,wanting to be perfect-or as near as possible.I have been told to do similar things by ex. (dont mention the M.S.,might bring the mood down,etc.)In short,we have freedom,I have it even with a walking aid,you have it too.I have been trying to make some space in my head over the last 15 months. Its happening slowly.I am educating myself out of 12/13 years of manipulation.Your relationship may require talking and moving closer , or separating, Please,please look up Live Bold and Bloom with Barrie Davenport on internet.(This will be in private) This is for health and well being and happiness! If you get this, may your health and happiness and clarity improve.Specific names not allowed?,GPs,any community care is useful and informative. All the best.

  • Nicole Lemelle author
    7 months ago

    Ray he I know I misspelled your name so apologize let’s just blame it MS!

  • Karenhorses
    7 months ago

    If I’m ever going to pretend to be perfect it will be for something very important to me, not to make someone else happy/comfortable. I’ve never been perfect so I guess now with my MS I couldn’t pull off a perfect but I do understand what you were saying. I know all the self talks I have with my self, but your boyfriend seems to be uncomfortable with your symptoms without giving any thought or feeling on how you him wanted you to hide them makes you feel. I wish you all the best and only want to suggest you talk about how pending makes you feel and that you are ready to be yourself..MS and all.

  • Tess
    7 months ago

    Why in the good Lords name are you with him?

  • Amber
    7 months ago

    I understand that it’s not my job to make sure nobody is uncomfortable. I can talk about my MS. I also know that I don’t have to keep bringing it up. It’s easier sometimes to give little white lies to get through small talk. It’s impossible to get away from pretending entirely. I guess everyone has to divide for themselves how much faking healthy they can put up with.

  • Grandpa.P
    7 months ago

    Nicole, I can’t understand why you feel a need to “pretend” you don’t have MS. Of course you should be aware that I come from a whole different demographic. I am a 74 male who was diagnosed with MS 23 years ago. At 50, when I was diagnosed, I didn’t even attempt to keep my condition under wraps. Trying to keep it a secret didn’t even occur to me. From being a marathon runner to bring a person who dragged my left foot, was experiencing major fatigue, and needed a can to walk, I was too old to care about what others thought about me. I just did what I had to do to live the rest of my life. You, however, are young and from what I understand, have a serious relationship with your young man. Your situation is greatly from mine. But if you would just listen to my unsolicited advice I would say to you that you are making a huge mistake by pretending that you’re “perfect”. Nicole, you are perfect already. Things are what they are. We didn’t ask for this to happen to us, but it did. Just try to make the most with what you have. Trying to be something that you are not is, in my opinion, a huge mistake. If people around you can’t accept who you really are, then you don’t need to be around them.
    What’s that old expression? Words of wisdom spouted by some well-known person in history:
    “To thine own self be true”!
    There’s no need to trying to be something or someone you’re not.
    Be true to yourself. May God give you the strength and wisdom to make the best decision you can. Hang in there.

  • crzyallday
    7 months ago

    Excellent reply.

  • ASAPcindy
    7 months ago

    Just a fact of life: nobody’s perfect. I have brown eyes, brown hair, and ms. I understand the need to present as ‘perfect’ I played that game for many years. I lied to everyone including myself. Sooner or later there will be a tipping point- the reality of this disease will be too big to shoo away, and then what? Will he cut and run because you are not the person he wants you to be? Or will he stay and be miserable because he didn’t chose this life? Or will you find yourself saying I may have a chronic illness but what’s your excuse for being a chronic jerk? I have no answers or advice, but ms or marriage came with no instructions so most of us are just winging it as we go. Perfect goes out the window when you are just trying to survive. Life will evolve and answers will present themselves, but they may not be the ones we want. But it’s not all gloom and doom. I’ve been married 35 years. I have two grown functional adult daughters that blossomed in the shade of ms. My kids are kind people because they learned early on to look deeper than the surface, that things are really closer than they appear in the side view mirror. Being perfect is too much work with little return, but we all have to learn things in our own time. Good luck to you. You don’t have to be perfect to be worthy. We are ultimately walking this path alone, but there are good people everywhere to lessen the load. Sometimes good enough is good enough.

  • debshoot
    7 months ago

    Oh, Sweetheart…. this is so not the man for you! Living with MS is challenging enough without being with toxic people asking us to be something we are not. It hurts me to hear your story and that he would ask this of you. You deserve so much more in a boyfriend! Hugs and best of luck to you!

  • Tess
    7 months ago

    I completely agree. He has no right to ask you to pretend in order to save his face. Drop him.

  • freedom
    7 months ago

    ThAnk you for your no honesty and vulnerability. I feel ashamed at times of my walking, trying to stay focused on conversations etc. I worry when I meet new people they will realize my cognitive short comings…makes me want to be a recluse. We have to be who we are and it’s so hard. Thank you.

  • Kristina
    7 months ago

    Hi Nichole,
    I am sorry you felt it was better not to be yourself. That doesn’t feel good. What I don’t quite understand is why…why was it important to him and for you by extension, for you to hide your symptoms? What would the knowledge of them have changed?
    I can sympathize with you. I have been starting to date. I struggle with wanting to present myself in a positive mannor, but also want to be truthful. I can see how things might get a bit complicated at a work function. Sort if like a pregnant woman seeking work. No one is allowed to discriminate, but she is given a better shot, usually, if she can “fake” unpregnant. The additional allowances that will be required, medical expenses, and time off for family care, are not usually high on a prospective employers wish list. I can see how a chronically ill, medically expensive potential spouse might also not be “discriminated” against, but might not be counted in the employees “asset” column when reviewing his future employment.
    I don’t want to villanize him, his workplace/job, or put you down for doing what you thought was best. I just am not sure why it was decided that it was better for you to go, as well as for you to pretend. Would you mind expanding on the motivation to do so? I feel like I am missing a key part.
    I hope things work out the best for you and your future. We all have to live our own lives, and deal with our choices. I am in no position to tell you what you should or should not do. If you decide to stay with your boyfriend, I do hope for you that you can share your feelings with him. He may have no idea what he is really asking of you when he wants you to pretend. If he understood, he might find other solutions that aren’t so difficult for you.
    I hope things have improved, and that you feel all the support the readers have for you! Best wishes to you Nichole!
    Kristina

  • ericawilson
    7 months ago

    This breaks my heart. Nicole, I’m not sure of you were dating this person when you were diagnosed, but MS is stressful enough without the added stress if not being fully accepted by the person who is supposed to love you. Please, if you haven’t already, have this discussion with him. His response will tell you what you need to do. If this is an abusive relationship (emotional abuse is as damaging as physical) please get help and leave the relationship as soon as you can. I will be praying for strength and peace for you.

  • Tess
    7 months ago

    I will be praying for you too.

  • Nancy W
    7 months ago

    A lot of people are commenting that you should end your relationship but that can’t be easy. Does he know how you feel about trying to be perfect? Have you shared this article with him?

    When I saw your title, Struggling to Be Perfect,” it reminded me of my journaling a few days ago. MS can make me imperfect in what I am doing. Whenever I made a mistake, I would think that I need to pay more attention and I will do better next time. Last week, I realized I have to give myself a break, the same break I would give someone else who made a mistake.

  • michclaud
    7 months ago

    Nicole, show him the door! You don’t need that kind of stress! My daughter just bought the house that I have been living in for 14 years, don’t get me wrong , I am glad that she & my son-in-law bought the house from my housemate who was going to get married, that meant I wouldn’t have to move! She has tried to get me to go to my great-grandson’s baseball games, but I cannot be out in the heat! She was so mad she didn’t talk to me for 2 days as punishment! Lol!! it was the nicest 2 days I had had in a while

  • Joyce12345
    7 months ago

    I’m glad I reread the rules before I commented.
    UGH! Who does he think he is?? If he doesn’t understand or respect you now he never will. God has a plan for you, Nicole. Don’t settle for some ****************. Oh my Lord girl. You’re beautiful, articulate, and it appears you have a loving and caring soul.
    If he ever makes that ************************comment or anything like it again offer him a brown paper bag. Tell him to put it over his ugly self and then say, “Now YOU’re perfect”.

  • mcknighm
    7 months ago

    Nicole, you are perfect already. If a man can’t see that. He’s not worth your time.

  • eagle1967
    7 months ago

    Nicole, You do not need the added burden of pretending on top of dealing with MS. I know. I lived it. I just separated from the mother of my three kids. it was hell living up to her unreal standards. It took a huge effort to get away from her. But oh-my-god what a difference! Have faith, you deserve the right partner, that person is out there. Courage.

  • Joyce12345
    7 months ago

    Amen eagle1967!!

  • meghmacn
    7 months ago

    This is so powerful! One of the hardest aspects of disability for me has been losing independence but a close second is feeling as though I’m losing my voice, my sense of agency and having to play pretend.

  • Joyce12345
    7 months ago

    Don’t you dare pretend! God created you the way He created you. I think you’re courageous and awesome!!

  • Jdenkinger
    7 months ago

    Wow, that sucks. Honestly, doesn’t sound like your man is very mature. That sounds like an awful situation and I wouldnt stand for it. There are plenty of other fish in the sea who will embrace this and not make you be someone you aren’t. Stand up for yourself and be who you are. Sometimes its all we have. Stay strong.

  • Joyce12345
    7 months ago

    Amen. Amen. Amen.

  • Valerie O'Neill
    7 months ago

    I’m so sorry your boyfriend makes you feel like you must put on an act to be perfect & not yourself. It sounds like to me that he is in denial about your Multiple Sclerosis & everything it entails & is making you a nervous wreck. The question is what is he going to do when you can’t pulloff being perfect? And how does he act when you ARE struggling? I think you should have a serious heart to heart with your boyfriend because you should not feel bad, self conscious, guilty or worried about concealing your MS & putting on an act.You shouldn’t feel like your under a microscope. Life is challenging enough as it is. It is what it is, & if he can’t handle it & support you whether your having a great day or falling all over the place then he is not a person you should waste your energy with. As you know energy is a precious gift when your dealing with the unpredictable Multiple Sclerosis Monster & you need to reserve what you have & use it wisely. You need a person who is going to ADVOCATE FOR YOU, go to bat for you, LOVE YOU & ACCEPT YOU FOR WHO YOU ARE, not doubt you, belittle you & make you question every second of the day. It’s one thing to be encouraging when your struggling but when your partner’s worried about you being perfect, then it’s not about you, it’s about him. He needs to accept you for you because there’s no such thing as PERFECT. AMEN!

  • Cynthia
    7 months ago

    Valerie, what you replied was just so perfect. No pun intended. Really though you hit on all the very feel situations.

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