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Identity Thief

Identity Thief

Everyone can look back 5 years and say wow I was so different then. We can all remember the things we did years ago that we are not able to do now. We also recognize the loss of abilities that come with the passing of time. Yes, we all become different people over time but my progression seems to be more in months than years. I remember last summer walking at our local park. Today I wouldn’t even attempt a trip around that walking track. It’s like my life is always evolving into something new. One day I can accomplish task that are impossible for me only one day later. Then in a few weeks I’m able to do it again but not at the same level or intensity.

MS has stolen so much from me that I could probably name fifty aspects of my life it has touched. I guess the top things are my job, my ability to walk, my driving privileges and my independence.

As people suffering with MS we face immense hardships due to our physical disabilities and have to overcome social stigma that surrounds the disease. I feel that pressure every time I mingle with the general public. Whether it is true or all in my mind, I feel that people are always staring at me.

Some people politely ask what’s wrong but most don’t say anything. I believe they jump to the wrong conclusions and think the worst. I usually get sympathetic smiles and nervous sounding hellos. But I also get dirty looks that I interpret as “She looks fine to me, why does she need that scooter”?

Another major obstacle is trying to integrate with normal society. Most events and venues do not cater to people suffering with MS, which makes assimilation discouraging and sometimes impossible. When interaction is achieved usually one of the first questions most commonly asked is, “So what do you do for a living?” The majority response is an answer that explains what you do to be a productive member of society. In the eyes of most people that means having a job. Many with MS have been stripped of their life long answer to that question. While in the past we could have proudly said I am a teacher, a lawyer or a waitress. Now we must deal with the fact that we are on disability or only able to work a part-time job. This lost can make interaction uncomfortable. For me, I usually indecisively respond by saying, “I am retired”. Then I try to move to another subject.

MS leaves its victims striving for the best quality of life we can get. After all, Multiple Sclerosis does not kill us. For me it is annoying and a huge inconvenience that sometimes causes problems. I acknowledge Multiple Sclerosis in moderation but I do not let it run my life. Still it does continue to humble me and shape my world. MS is recreating me.

Multiple Sclerosis robs us of our outside roles and independence. Which most times amounts to our identities. I guess you can say MS is a thief. Or better yet an identity thief.

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.


  • 1wb3toa
    3 years ago

    I did not try to log in with 1wb3toa. Sorry. I only wanted to mention to Nicole that while my problem is not with MS but with epilepsy, I know about dealing with little or no memories. My seizures occur in the memory part of the brain, the left temporal lobe. As well many of the medications I have to take all have memory loss as the main side effect. I now only live in the here and now since my short term memory does not stay. Am on disability pension myself, from the RCMP. I sympathize with you & I hope that there will be enough studies to find a cure for MS asap!

  • OliviaJ
    3 years ago

    I identified with almost every word. I’ve lost friends over this shit disease. But I used to live in a Canada’s biggest city. It was a great place to raise kids and my husband and I had jobs that enabled us to live a good life. Then PPMS got me when I was about ten years older than you were when you got kicked. I was so grateful that we’d had kids and they were super-competent young teens.

    But where we live now, in rural Newfoundland, when we go out to the mall, for example, I grin as warmly as I can to every single person we pass. I find that smiling disarms people and they smile back instead of looking away or giving me a curt hello and a grimace of pity.

    All the best to you and thanks for the blog.

  • @masbrautigam
    4 years ago

    Cannot agree more:) Great story!

  • Sioux
    6 years ago

    I love your response to people who ask what you do for a living

    “For me, I usually indecisively respond by saying, “I am retired”. Then I try to move to another subject.”

    I am afraid that I may have asked you that question when we first met. I apologize if I offended you. I guess I assumed that just because someone is in a motorized scooter does not necessarily mean that one is not employed.

    I have able bodied friends that are not working that find the new social situation awkward for the same reason. It is the same feeling that I get when people assume that I have children because of my age. The talking comes to a stand still when someone says something like,”you have kinds so you know what I mean” and I don’t. Small talk it tough on a lot of people. Hopefully people can get beyond the small talk and begin to see who the person is.

  • Mspbfh2
    6 years ago

    MS is definitely an identity thief; after nearly 40 yrs I no longer can work as a nurse. It takes a huge part of my self esteem away. There are days where I think everyone would be better off I died (including me). Today the dr told me I may need a cane or walker (she is sending me to PT for evaluation). Guess I’m having a pity party now. I do understand I am lucky since I have disability income and we aren’t hurting for money. I would love to have just one day without pain. Oh well, enough feeling sorry for myself…ave to go make dinner.

  • jennyb
    3 years ago

    I use a four wheeled walker, and it isn’t so bad.
    Falling down is not an option for me for a lot of reasons.
    The walker was recomended by my PT, and she knows better than I, so I went ahead with it. I am also “retired”, hahahaha. It’s hard to believe now how I handled myself, multitasking and all………..

  • Bill
    6 years ago

    MS has stolen my identy to who I was to my wife. I feel like Im stranger in my own house…….

  • Patricia
    6 years ago

    I love this topic. MS is a identity thief. It’s not like sleeping with someone and catching AIDS. We are temperature controlled and activity challenged. Many see us and as stated go judgmental on us. Why she or he have a handicap sticker? Or stare at you like idiots. I sometimes want to say out loud “What? Got questions? Ask! MS, it is just here. Like an unpredictable monster that pops up whenever it gets ready. One day we do feel good then the next few or weeks etc. we are tired, in pain, a part of the body feels too close to an oven when standing in front of the air conditioner. Yes its an identity thief and Manipulates Significants. We never know when and it’s as some would say in the bible, a thief in the night. We sleep and wake with some other type of person we went to sleep on…Mighty Special one who is living with MS. Must Survive in spite of. Keep it moving.

  • Tracey
    6 years ago

    Very well said!

    Several months ago I made a post on Facebook about which of the fives senses you would give up if you had to choose. I was being sarcastic because my bulldog had horrible gas that day (most days) and it was wreaking havoc on my sense of smell.

    Her response was this:

    If I gave up sight I would no longer be able to see my children’s expressions like on Christmas morning. If I gave up hearing I would no longer be able to hear the wind blowing through the trees or the birds sing their sweet lullabies. If I gave up touch I would forget how it felt to hold my husbands hand when we first met and how it gave me goose bumps. If I gave up taste then I would NEVER get the new Fall or Spring fashions to match. Oops wrong taste! If I gave up smell then all the roses planted in the world would have been planted only for their beauty and I like to take time to smell the roses. I choose none of the above (I know that wasn’t an option). Even if I was told I had to I wouldn’t and that is because I’m bull headed and dance to my own tune. I wouldn’t give up my legs either….this walking world has no idea unless they have lived a day in the life of one who can’t. Yep, add party pooper to the list too. I could give that up right?

    To that I say:

    Everything she says is true and I have thought of every one of those and more. The smell I was referring to may have been Diesel’s behind but the touch was mine. I haven’t been able to hook my own necklace or earrings for so long it is getting to feel like a vague memory. When the numbness first started if I could see it I could still hook it, but now, even if I can see it my hands are so numb I cannot grasp it to unclasp the hook. At first I thought lever back earrings where a Godsend but even they are getting difficult.

    I can’t feel the softness of skin….I have never felt Alex’s skin as a baby….ever. He is now 14. When I wiggle my fingers it is like feeling sandpaper.

    What started out to be funny has really turned into appreciate what you have and be thankful. That old saying,”Take time to smell the roses”… it! What if you can’t tomorrow!

    Life is good and precious. Be thankful for what you have while you have it and even when you don’t, still be thankful! It can always be worse!

  • purplecello
    6 years ago

    Its not so much that MS took my identity, its about where do I next? I need to work. I can’t afford not to. I have to ask myself: what can I realistically do? What will I be able to do in 6 months? Will my employer be understanding? I’m looking forward. That’s what scares the crap out of me. I’m working with the “ticket to work” program to try to find something. And then there’s the big question, if/when I get a job do I “out” myself and to whom?

  • Nicole Lemelle author
    6 years ago

    purplecello, Valid concern but one step at a time

  • Susan
    6 years ago

    I really like what justsayn says, “Don’t let others define your new normal”. I was DXed in 1996 and ignored it the best I could for quite awhile. Eventually, however, I couldn’t ignore it anymore but struggled with using a cane, then a walker, now a wheelchair. I especially struggled because I was working in a very high pressure environment where certain individuals jumped on ANY opportunity to make you look bad.

    I was eventually downsized out of a 10-year job and despite a stellar 25 year career, couldn’t find another in that field. Prospective employers were all excited about my resume and interviewing me…right up until I came in with a walker.

    I eventually got a job in the non-profit world and I won’t ever go back to corporate America. I work for a Center for Independent Living (only part-time since I now get disability) and I encourage you to look for one in your area. CIL’s are designed to help people with disabilities stay out of institutions and be active, safe and independent in their own communities. I have learned so much about defining a “new normal” for myself since I’ve been involved with the CIL. The majority of employees (and board members) are people with disabilities and the focus is on what we CAN do, not what we can’t do.

    There are Centers for Independent Living in every state and in many foreign countries. Just “Google” or “Bing” Center for Independent Living in ….whatever your state is. Many have volunteer opportunities, social opportunities….and peer support is a core service offered by all of them. Get in touch with the one in your area and let them help you define YOUR new normal. They can help you become comfortable with your situation, overcome obstacles and learn how to deal with unkind and nosy people.

    I no longer feel the least bit self conscious about using the electric cart at the grocery store. In fact, I’ve talked to the managers at those I frequent and they’ve told me I can just call when I get there and someone will bring one out to me so I don’t have to wheel myself in and then have them keep an eye on my chair. I’ve even asked total strangers for help when I’ve needed it and most are very gracious.

    I figure some people might stare, some might even think or say ugly things – that’s THEIR problem. Everybody is dealing with something – when someone is ugly, I just pray for them because I know they are trying to make themselves feel better by putting me down.

    Ok, sorry for such a long post! But I hope something I said here might in some way help someone.

  • Nicole Lemelle author
    6 years ago

    Susan, It did.

  • justsayn
    6 years ago

    Hi Nicole. It’s good to see you here. I sometimes want to shout “Don’t Let Others Define YOUR New Normal!” While all of that stuff about what MS as taken and how you believe others think of you might well be true. I see you in another light. I want you to see yourself differently. I hope the next time you speak to us, you will focus and “celebrate” whatever is still POSSIBLE.

    It’s terrific that you are social despite the obstacles of moving around. And yes, sometimes you can not go (especially if not safe). Try not to obsess on the can’ts of your situation. Focus on how to do things you want.

    If they ask what you “do”, tell them with a smile. You write a great blog–My New Normal and here you are contributing to this website as well. You are a recognized writer helping others on the world wide web….nothing to feel akward about. (You are WORTHY!)….CHIN UP

    I KNOW (first-hand)that it’s HARD and sometimes it’s SAD but let’s not victimize ourselves. TAKE CARE

  • Nicole Lemelle author
    6 years ago

    justsayn, I don’t victimize myself ALL the time,

  • Barbara
    6 years ago

    well said!

  • PJ
    6 years ago

    The title had me going for a minute…I thought, “oh gosh, gotta remember to place personal information directly in shredder box” only to read on… -:)

    Thank you, Nicole for articulating what I feel…The social stigma is enormous, the dependence scary but the WILL strong!

  • Nicole Lemelle author
    6 years ago

    PJ, YES!

  • Tonia
    6 years ago

    I can so relate. I was diagnosed in 2008. If I hadn’t lived through the past five years, I wouldn’t recognize my own life.

  • Nicole Lemelle author
    6 years ago

    Tonia, At first glance, I look like someone else, but if you stick around and engage me you’ll be pleasantly surprised.

  • Gale L
    6 years ago

    Well said. I was also diagnosed in 2008, and if it weren’t for a few things, I’d think that this was either a sick joke or a sick game show. :-S

  • ptb939
    6 years ago

    This reminds me of myself. Sometimes I have a pity party about what I can no longer do, but I don’t live there. I do what I can even though sometimes it’s not much. Seems to me if there was a huge financial reward for a cure, we’d have one. A few years back my cousin asked me, “What’s with the cane”? I liked that because most people don’t ask or say anything.

  • Nicole Lemelle author
    6 years ago

    pb939, Its nice to be acknowledged.

  • madhatter40
    6 years ago

    ptb939 I feel you on this one because no matter what medication I take, I still feel the depression everyday and everyday it’s a fight to keep my head straight.

  • PegLeg
    6 years ago

    Hello,,I was a phys ed teacher,,showed horses, raised and trained dogs, so when I was DXed with MS, and had to some what give things up,,was sort of sad,letting go of my past, my husband is my biggest supporter, as my 2 sons are, I still ride, and help train dogs,, giving in is not a option

  • Nicole Lemelle author
    6 years ago

    Peg, “No white flags” here as Steve Gleason of the Saints proudly shouts!

  • Kim Dolce moderator
    6 years ago

    Nicole! I love your title and the play on words 🙂 And you really nailed it with your analysis of the subtext behind “What do you do for a living?” I, too, feel that they are asking me to justify my existence, or my self-worth, or, at least my participation in social life that others feel entitled to just because they are able-bodied and work full-time. Nicely done. Kim

  • Lori
    3 years ago

    One of the hardest parts of this disease for me has been the progression from “what I was” to “what I am”. Like many people, I was identified by others and myself as what I did (or could do). In my field, I was considered an expert, the one that people came to for answers – after all – I DID write the book 😉 I had a memory that could recall any small detail that would lead to a solution, answer any question, speak to any size audience, and people EXPECTED me to “know”. Now – I am lucky to remember what I had for lunch by dinnertime! I have arguments with my husband about the things he hasn’t told me about – which of course he has – I just don’t remember the conversation.

    It’s been years now since I had to quit being “who I was” professionally and go on disability – but sometimes I still get upset over it as I see former colleagues still jetting around the world doing what I used to love so much. I didn’t really think “what I did” defined me back then – but I found out that much of what I perceived as my “worth” and usefulness (in the world and in the family) was tied up in that.

    I have struggled to find a new “worth” in this decline. It’s hard for someone like me to believe that just waking up in the morning is “worth enough”. But learning to believe that and see it in others is my new lesson. It’s freeing actually when there are no expectations of you 🙂

  • Nicole Lemelle author
    6 years ago

    Kim, Thanks.

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