MS and Identity

Joan at A Short in the Cord recently mentioned that she sought the guidance of a life coach through the Multiple Sclerosis Association of America. First of all, I didn’t even know that the hub of this association exists right in my area: Cherry Hill, NJ. Secondly, I didn’t know that anyone associated with MS was available to instruct us on what to do NEXT. I’m presently considering enlisting their aid.

I’ve wrestled with identity problems for the past five years or so, as I stopped working in my fast-paced health career (radiology) and began searching for part-time, low-stress work. I’ve had the advantage of my husband’s income to keep us from having to move in with one of our sets of parents, but in today’s world there are always more and more monthly bills, taxes, and unexpected medical expenses. So the advantage has in no way been an excuse for me to sit back and do nothing. To this day we still need whatever I can contribute (social security payments et al), and then some. I always wonder about stay-at-home moms (or dads) who elect to do this.

The search for my new career— and therefore a big piece of my identity— has been ongoing. What can I realistically do? Will I have to settle for something “just to pay the bills”? In the past (pre-social security days) I did online customer service work to help us stay afloat. But I like the right to the “pursuit of happiness” that lies within our Declaration of Independence. I’m an independent, career-minded girl who wants to pursue something fulfilling and joyful. My quest within the past five years has led me to part-time library work, which has made me so happy and fulfilled that I’ve questioned why I ever became an ultrasound tech in the first place. Like finding the perfect mate: there is a seamless fit. But because of my own long relapses, maintaining the identity of a library staff member has become all but impossible. In the past year I’ve returned to a volunteer status with our library system. It’s much safer, both physically and emotionally. I can live with it because I still identify as one who makes a difference in this public service realm. That’s what’s so great about libraries: there are few boundaries between the ranks.

On the home front I’ve sought writing opportunities, since writing is one of my biggest passions. I’ve identified myself as a part-time freelance writer who specializes in health topics. Seems to encompass my areas of interest and experience. But lately I’ve found myself looking to branch out into other areas of writing because, to be honest, I’m burning the candle at both ends with the health writings: this site and and the MS Life column. I love both, but I don’t want to soley identify myself as an MS writer, much as I don’t want to soley identify myself as an MS patient. So I’m now in active pursuit of non-health writing work. It’ll come; I just need to be more patient.

In my personal life I have a hard time identifying with non-MSers. In my safe little haven I can imagine that I’m normal and can do everything everyone else can, but when I get out into the world with those who don’t think twice about having kids or careers or non-stop days, I am sorely at a loss to identify. Reminds me deeply that I have MS and that I am at home, tenaciously looking for my own purpose. In the same vein, I cannot always identify with other MSers because we are all so different in backgrounds, disease statuses, and present situations. Although I have an easier time relating to this second group of folks. We have the common thread of navigating the frightening neurological unknown.

I haven’t a clue whether I’ll identify myself as a mother, as a successful and fulfilled writer, or as a personally-fulfilled MS patient in the near future. The road is long and winding and all aspects of life are never completely identifiable.

10 comments

  • This is a very tough issue. Although I still have my career, I am finding it hard to adjust to the new me with limitations I never expected.

    I was just talking to my mom about her friend’s son and all the struggles with MS he is going through. He is very young and in college and he is having a really hard time letting go of his dreams even though his health is terrible. She said he won’t even talk about his illness most of the time. It makes me wish I could reach out to him and help.

    I remember during the fall I was obsessed with finding the true me. Now I have a better sense of myself but the struggle with identity is still ongoing. May you find some of the answers you seek.

  • Jen

    Thanks Nadja. It’s difficult to face the “what’s next?” phase at the ripe old age of 37. And the world really doesn’t have any specific answers to the question because no one knows what the future holds. My therapist can’t specifically direct me with this. It’s been more a matter of what I THINK I can manage in the course of a day. So I plug on, slowly finding things that fit and give my life meaning. I usually feel fulfilled but some days I see too many of the consequences (of MS) and I get mad. Feel cheated and lost. As is the reality for many MSers.

  • Jen – Apparently you were reading my mind or my blog yesterday! Look at the questions I was asking. I feel the same way you currently do. I’m only 37 and want to forge a path for myself. One that will be rewarding in all aspects. Can we as young women (I consider mid 30’s young 😉 figure all this out? It may be time for a life coach, as long as they don’t “lead” you down their road.

    Wow. What could be next I wonder? Maybe we shouldn’t ponder so hard and just roll with it? Have Goals and Dreams, but, let somethings just happen in life? I don’t know.

  • Jen

    Lanette— I KNOW! I just saw the blurb in Google Reader for one of your posts. Gotta head over there. But you sound motivated in your most recent one. GOOD!

    I NEED a path because I’m a terrible self-starter and will dawdle away the time otherwise. It’s like I need someone to get me on a strict schedule for a while for me to get into a groove. Then maybe I can take over. I’m so unmotivated right now. I NEED DISCIPLINE!! Ewww…that sounds kinda dirty, doesn’t it?…..

  • OTHER people have always had more problems with MY identity than I have. Once a co-worker called me out, accusing me of not taking sides (her side) but instead agreeing.understanding both sides. I really gave that a lot of thought and once and for all realized THAT IS WHO I AM. I am NOT wishy-washy, but I am open to considering not dismissing the ideas of others. I worked 40+/week for 18 years with MS, through relaspses/legally blind, dead fingers, the works—I just accepted each day as it came, adjusted my coping and pushed on. My MS took the most common course, getting a bit worse each year and I gave 100% of what I could on my last working day. Then I had to reinvent how Diane would serve/have purpose in this brief life of hers. Each year I find more things to do and part of the journey is figuring out how I will adapt my MS to continue on. Except for other MS bloggers, most of my friends are non-MSers. We all are in the same boat called LIFE. We all need what the other can give, the lessons they can teach us. One big job you will always have is that of a teacher. How much you give to that is up to you. (Up to US.)

  • Jen

    Thanks for this comment, Diane. You seem to have found a way to persevere. I guess my big problem was my slow removal from the work force and not having the Family Medical Leave Act to support my part-time efforts. It’s almost easier (not physically but in terms of beauracracy) to remain as a full-time employee and have the benefits of the FMLA and/or company disability. It’s quite a bit trickier once a person becomes a part-time employee (20 hours or less.) A woman at Joan’s chatroom has been having the same ongoing problem where her union is trying to railroad her because she’s part-time and wants to adjust her hours. This also brings in the Americans with Disabilities Act, which doesn’t always stand up in a place of employment. But I’ve had the most problems with the former Act. So now I’m home and trying to carve out something meaningful (to me) and it’s a snail’s pace for sure.

    You’re absolutely right about the non-MSers. My family and friends keep me grounded and “out there”, although I sometimes gripe– like now– because I appear “normal” and sometimes people forget that I’m limited and that being home trying to find myself is frustrating. Even Bill doesn’t always get it because he’s frantic at work all day and would love some time off. But I remind him that actually being laid-off sucks after about a week. So yes, we all bring something to that table we like to call “life.” Variety is the spice of life! Ha ha.

    Jen

  • WILHEMINA

    MY DAUGHTER HAS BEEN RECENTLY DIAGNOSED AND SHE IS VERY DEPRESSED–SHE IS 38—VERY SCARED AND I NEED PEOPLE TO TALK TO HER WITH THE SAME THING GOING ON—I WANT TO HELP BUT KNOW I CANT—HELP US—

  • Jen

    Hi Wilhemina—

    Thank you for contacting me. I’ve had MS for nearly 11 years (I’m just about 38 also) and I’m no pro, but I do have some experience with depression. I’ve had 2 major depressive episodes in the past 4 years and have been in counseling with a therapist and a psychiatrist ever since. Both have helped me immensely. Ways to find a therapist— if your daughter would like to see one– include contacting a local hospital or checking with your daughter’s insurance provider for a list of practitioners. You can also contact your local MS Society chapter (I’m assuming you live in the U.S.?) and find out about therapists, support groups (both for patients and families/friends), and other activities that bring MSers together to share and to feel understood. Here is the link to find your local chapter:

    http://www.nationalmssociety.org/find-a-chapter/index.aspx

    A good online question-and-answer community is Health Central, where experienced MSers post information and your daughter can connect with them and ask questions or post her own MS story. This site builds a lot of community and friendship:

    http://www.healthcentral.com/multiple-sclerosis/

    And there is a community of MS bloggers who share their stories and support one another. Lisa Emrich, who runs it, has a link to it on her website, where she also posts continuous MS news items:

    http://brassandivory.blogspot.com/

    I hope these things help your daughter. I’d also be more than happy to speak with her (or you) privately through email:

    womenzhealth@yahoo.com

    It will be okay. It’s only the beginning so it’s extra scary right now. But there are lots of people available to help.

    Sincerely,

    Jen

  • I started blogging since I still miss working, outside the home, but by no way am I a writer. You have a talent for writing and am glad to see you use it. I just wanted to say, what my title is, to anyone who reads my blog, because of all the bad news constantly.

  • Jen

    Hi Kimberly—

    I’m going to check out your site. Apparently you ARE a writer because you have a blog. I think a writer is someone who can coherently word what they’re thinking and/or feeling. Doesn’t matter whether it’s for the newspapers, for children’s books, for a church newsletter, or just for the person writing it.

    YOU are a WRITER! Good for you! I’ll be over shortly…

    Thanks for stopping by,

    Jen

    PS: The name of Kimberly’s blog is “Things Could Always be Worse.” She hit the bullseye with that one. I have to remember that myself.

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