Labels

I’ve been thinking about labels a lot lately. Specifically, the ones I use for myself. We all have them, don’t we? Especially with the inevitability of social networks these days, we’ve had to get more comfortable putting some kind of picture of ourselves forward to the world. And even if you’re a very private person, you probably know which boxes you fit into.

Me? I’m a woman and a sister by birth. I’m a Southerner because of where and how I was raised. I’m a wife and a mother because I chose to be so. I’m a reader and a writer by nature and profession. These are intrinsic, unchanging pieces of me, and have been for most of my life.

For the last nine months, I’ve had a new label. I’m a person with MS. And that has a big impact on me every day, regardless of how subtle or obvious my symptoms might be.

Like many people living with this disease, I’ve developed a different, more mindful awareness of my own body. I have an altered set of expectations about my future and a clear sense of my own priorities for the years to come. I’ve found that I’m more empathetic toward other people with challenges, physical or otherwise. And I’m learning every day that almost everyone falls into that category at some point.

I’ve chosen to be open about my diagnosis, so I’m very aware of the subtle ways in which other people respond to this new label. There’s an awkward moment occasionally, but generally I just feel more care from my friends and family. People are more willing to put their support into words, which I appreciate. Strangers are more willing to connect as well, commenting on my blog or opening up to me when we meet. I wish we were all bonding over something simple, like a shared love of cheesecake, but when it comes to human connection, I’ll take it. We really are all in this together.

Obviously, MS is a label I’d give right back if I could, but unfortunately that isn’t an option. I can already tell that the past nine months have changed me irrevocably. As difficult as this disease is, I think -- and I hope -- that some of those changes are for the better.
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Katie

Katie Jennings, Blogger

Katie Jennings keeps busy juggling a son, a husband, a job, an old house, a bossy cat and unpredictable Vermont weather. She was diagnosed with progressive relapsing MS in December 2012. She blogs about all of it at http://steadyshegoes.com.

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    21 Comments

  • jodylacoss  Oct 15, 2013 4:50 PM
    Nicely written. Keep writing, please.
  • Robbin Bassett   Oct 15, 2013 4:59 PM
    Love!! ❤️
    I too am just under 10 months into my new label. I am not dealing so well with it. I have always been the 'caretaker', always been the wife and mom that has done everything! Hated it and complained at times, but would not have it any other way.
    I never imagined I would miss working full time, being a full time housekeeper, wife and mom. But I miss it like crazy! In the last nine months I have had to allow my daughter and husband to do what I would normally do! I work only 20 hours a week, if that. Thanks to the new wonderful fatuige, that has taken me for a ride that I would love to get off!
    Learning to live with MS is a daily struggle and I hope one day it will be easier!

    This is my first time commenting or writing about my struggles. We must support each other! Love and prayers to you all!
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    lisaflan  Oct 15, 2013 5:18 PM
    I have known for a few years but refused to accept it until a few months ago when my neurologist highly advised I start injections to slow progression. I lived through the denial stage for too long, anger came easy, but now acceptance is starting. My label first and for most is mother, wife, medical teacher and finally ms patient. Well thought subject
  • April   Oct 15, 2013 5:24 PM
    That was one of the best things I've read. I am only 3 1/2 weeks into my diagnosis. I am a 38 year old full time working mother of 2 with a wonderful husband. I've grasped this the best I can but my biggest problem is the frustration I have with not always being able to do everything I've always done. In the frustration I tend to push myself instead of listening to my
    Body. I tend to think that if I push through it the symptoms will go away.
    I love that there are sites like this where there is real dialogue with others in similar situations. Thank you
  • Margaret   Oct 15, 2013 5:28 PM
    I pray for the day when our label is former MS patient!
  • nancy valley   Oct 15, 2013 5:37 PM
    I feel my privacey has been impinged. I have a few family members informing PEOPLE! about my diagnosis. I haven't told anyone except my husband, daughter and her husband, my immediate family, and 3 friends. Well, guess what? I know way many more have been informed. This is very personal to me and I'm a private person. They haven't seen me when I'm having a flareup or when I CAN'T use my hands FOR 9 WEEKS and in severe pain. Why do I have a handicap placard for the car, IGNORANTS want to know. I don't wish this for anyone. No one wants to hear me,I guess. So I AM FINE!! I just told a friend today about having MORE tests done and I would be gone all day. She changed the subject and made it all about herself. I listen and have huge empathy for anyone. So in a nut shell, this incurable and progressive disease....they all say "I know someone who has that". And ....what's THEIR point? Oh, I guess I know someone who has cancer. Enough for now except for they are TIRED too...LOL
  • Brandon Head   Oct 15, 2013 6:34 PM
    What really gets me is the "but you look so good" statement. And it really does bother me. I wish they could understand, but I've given up trying to explain. Those that need to know already do. So I use my humor and sharp wit to shrug off their comments. Usually by making a circle motion in front of my face with my hand and saying "well, yea! cause I got THIS goin on"
    giving a sly smile and walking off.

    I was a successful chef, was very social, I partied too hard. I smoke too much. I drank too much. I'm 34 and thought I was invincible. The real friends treat me exactly the same as before. They don't hold my hand when I'm walking bad, but for darn sure they are gonna catch me if I fall (example)

    I'm four months since diagnosis. Unable to work. Battling and waiting for ssdi. Trying to find right meds. Through a divorce. Living on food stamps. Sick and tired of being sick and tired.

    But you know what....... I've grown more as a person in the past four months than I have in a decade. I've listened and shown compassion and been there for others in ways I never thought I could.

    MS might be destroying my brain but it created a heart big enough for the cosmos
  • Rich Edwards   Oct 15, 2013 7:27 PM
    I also dislike the MS label, mainly because of the pervasive opinions of what the disease really is. Both the visible and the invisible symptoms. Having been diagnosed back in 2001 and still kicking, I still struggle with the labels given to me from naivete.

    I am me though, and due to my own struggling upbringing I have some of the tools to help me through it. I still get therapy and need help but for those that don't have those tools to begin with. I sympathize greatly for you. The labels that are given to us, are not only unfair, but usually untrue.

    The best we can do is educate those that support us to our fullest extent. No matter how alone we may ever feel. We aren't. It is our connections that makes us strong. We never need to fight this alone. It is really hard sometimes to tell someone your symptoms that are the hardest to talk about. Find that one person and do it. It will always help in the end knowing that you are not alone to face the challenges we have in the future.
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    4dabells  Oct 15, 2013 8:24 PM
    Labels? Brain damaged. It's a great excuse for everything I need to giggle about, now. I'm milking it for all the laughs I can wedge out of people. It hurts too much NOT to laugh.

    I'm trying to find as many positives in this as possible and continue worshipping the God that planned this new life for me for his good reasons, as I follow his lead to comfort and encourage others as we journey this M.S. adventure together.

    I'm just 3 weeks into this journey and have barely left the house due to the effects of this "attack". I can't figure out if I should try to go back to work and just suck "it" up, wobbly pains and all. That is, when I feel I can trust my alien possessed body to behave enough to drive.

    Labels... Perfect husband, for my good man who listens to my constant description of symptoms like I'm a football game announcer for his favorite team's big game. Best bud ever, for my son who calls everyday and treats me just the same, not allowing me to pity party or think too highly of myself. Team players, for my co-workers who have assumed all my work tasks whilst I enjoy my new puzzle hobby at home.
    Labels can be good
  • Lizzie   Oct 16, 2013 2:43 AM
    I'm two years in and I understand and relate to every word Katie. I went blind in my left eye due severe ON; this, more than the fatigue, the leg pain, the sensory upsets, has affected me more than anything. I too was the independent one, but not being able to drive, hence losing some of that freedom and independence, is the real kicker. I was in denial for a while, pushed my body to breaking point thinking I would not let MS rule my life; that made me quite ill, but I have learnt not to do that now -I save my energy for the good things in life and bless every day. Good luck to you, look after yourself xx
  • eleni   Oct 16, 2013 2:53 AM
    The worst label is the one we use or they make us use FOR ourselves;that we are ill and that we must give up:dreams,goals,hopes,studies,life after all.
    against this label we should fight !
    We can not change the whay others think but for ourselves ,WE surely CAN!
  • Avatar
    elsenbro  Oct 16, 2013 6:49 AM
    A Tiger walked through a forest and came face to face with a Lily, yes, a Lily in the forest. “What a beautiful flower you are” the Tiger said aloud to the Lily. “Please don’t eat me” the Lily replied. “Eat you?” the Tiger said, “you’re much too beautiful, and not my type.” “I’m sorry” said the Lily, “you’re awesome too.”
  • Maria Pisciotta   Oct 16, 2013 7:31 AM
    Enjoyed reading your article. I myself do not struggle with MS but I've watched my sister struggle with the disease for over 20 years, so for me it's very personal. I also found myself relating to your article since I myself struggle with 3 auto immune disease disorders. I find that in illness we all have similar & common struggles that do unite us. My faith & family have been my saving grace. I will pray for each of you precious women as you continue this journey & encourage each of you to "NOT LET YOUR LABEL DEFINE YOU" accept it yes, but know your purpose & plan in this life is defined so much greater than your diagnosis. One day at a time & hope for a better future. Be blessed ladies & know who you are...
    Great Moms, successful professionals, devoted wife's, selfless caretakers,
    Great sisters, friends, co-workers, etc... and don't forget...
    Brave, courageous fighters who are very strong indeed! Keep up the good fight!
  • Maria Pisciotta   Oct 16, 2013 7:49 AM
    * I apologize my response seemed geared to woman only, it was only based on seeing women's comments prior to me refreshing my browser. Know I know men with this disease as well and have the same empathy, concern & compassion. My prayers are extended to you all as well.
  • Tonia   Oct 16, 2013 10:05 AM
    I completely agree, but I have found that because we don't necessarily look "sick", because our symptoms are sometimes are not immediately apparent ,people sometimes just don't get it. They will make a comment like; You don't "look" sick. i didn't know "sick" had a look. Chronic sickness is very unpredictable.
  • renee adams   Oct 16, 2013 4:12 PM
    I have had MS for 10 years now, still working full time despite blind in my left eye, the fatigue and the constant pain. 3 meds into this disease and nothing seems to be stopping the lesions, but I too tell everyone I have this disease. I'm not ashamed of it, it actually helps when the brain fog kicks in, I can laugh and blame it on the MS. I just love that their are groups out there of people who understand what we are going thru. My motto, I have MS but MS doesn't have me! Words I live by for now!
  • Megan   Oct 16, 2013 7:23 PM
    Took the words right out of my mouth....it has been 6 months for me.
  • Amanda Vaughan   Oct 19, 2013 8:09 PM
    Thank for for posting this. It was very insightful for me. I was diagnosed just 8 days ago, and I have a lot of learning and growing to do!
  • Avatar
    mlsalotti  Oct 21, 2013 9:11 AM
    I have only had the diagnosis for less than a week and am still reeling from it. Lots of confusion, anger and fear. Your post helps. Thank you! I have a great deal of learning and research to do.
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    A_J_  Oct 22, 2013 4:04 PM
    There are constant, daily struggles. All my friends and family know I have progressive MS. They tell me to concentrate on everything I can do and not what I cannot do. It took about 2 years for me to really accept my 'label'; and realize this is the 'new' me, I'm almost 60, married almost 35 years. My label has made me independent in some ways, but also more dependant on my husband. We would all love to be able to say "I used to have MS".
  • Rebecca   Oct 24, 2013 2:02 PM
    It's been 3 years now since I was diagnosed. I never had the denial of diagnosis and I never thought why me. I have thought why not some pedophile rotting in prison somewhere. My biggest struggle was fear. I'm a doer I'm the mom who takes care of the kids, laundry, bills, I paint the house....I get things done. That's how I earn my keep. My fear? If I can't stay focused and organized to pay the bills on time or remember to do what I said I would, if I can't get the cleaning done and paint my kids rooms then what is it that I have to offer? What am I bringing to the table?