a man

Struggling to Find a Purpose

Since I’ve been writing about my life with Multiple Sclerosis, I’ve covered a wide range of topics. Many of those will typically include pieces that discuss, not necessarily a specific symptom, but the changes and emotions I (or others) encounter because of living with MS. While symptoms like pain, fatigue, and cognitive function are extremely difficult to live with on their own, the collective effect that the disease has had on my life is sometimes the most difficult to deal with. One of these unfortunate effects that I struggle with, often on a daily basis, is trying to find my purpose in life.

Questions purpose in life

While not everyone with MS is on disability or forced to leave their career, there are many that are in just that situation. No longer able to work full time, struggling to fill their days. Additionally, many people may still work, but their bodies allow for little more than that. They are still making a living, but perpetually paying the MS Tax for it, leaving them with a tired life of only work. Whether the disease takes your livelihood or your social life, or both, it can create feelings of unfulfillment and lead us to question our purpose in this life. What’s a life when I’m not contributing and making a difference? What’s a life, if all it is is work?

Identity crisis

Losing my career to MS has still been one of the hardest things I’ve had to deal with. It is a constant struggle and source of depression for me. Anyone that thinks that someone like me doesn’t want to work has never been in this situation. Are there people out there that don’t want to work? Sure. But for the most part, people that are pushed onto disability hate it. Aside from considerably less money, it can leave you feeling disgraced, isolated, and lonely. There are many people that were brought up like me, with a strong work ethic, who are disgusted that we aren’t able to work.

Your job isn’t just a job

I spent a large part of my life preparing for my career and then working hard to excel in it. From grade school, through high school, college, and internships (I was fortunate enough to go to some very good schools, that had significant cost, first for my parents and then me, along with loads of professional experiences, all of that seems almost wasted now, particularly with chronic cognitive and memory issues). Then, starting at the bottom and working my way up. It was my life, and I loved it. All for it to be gone, almost over night. It’s created a real identity crisis for me. Who am I, if I’m not “Devin, the software engineer”? Yes, working isn’t the sum of our life, my career wasn’t all that identified me, but it was a pretty significant part of it. Your job isn’t just a job, it also helps you afford your lifestyle, it fosters friendships, and it’s integral to your entire life. When it’s gone, a lot of other things go with it.

What am I doing?

It’s been several years now since I could no longer work in the career I spent my life preparing for, and I still find myself asking, “What am I doing?”. Perhaps it’s particularly rough because I am single and have no children, no legacy. Just me and my awesome dog. I think if I had some sort of family of my own, I could tell myself (as many of you should), well, my job is to keep going and being as healthy as I can for my family. That my presence is important to people, and that alone is enough. Having a chronic illness, is, no doubt, a full time job for many, particularly as it progresses. That’s a lot harder to think though, when you are in my situation, still fairly young and unattached. No job, no family of my own, not much to do each day (and not being able to do much each day). Really, what am I doing?

Life isn’t over

I don’t say that for pity, I say it because I know there are others out there, just like me, thinking the exact same thing. What purpose do we have now? That’s a serious question and I don’t have all the answers, not ones I’d like anyway. I do like to think that everything I’ve gone through has prepared me for something. I know I’m tougher than I once was and I’ve learned more about life in my time fighting this disease than I ever did in all of those years of schooling and professional experiences. I know I appreciate life a lot more now. So I’m working on finding that purpose, that’s what I’m doing now. I may not have a clear answer yet, but I’m on the journey, working at it, and you can be too. Life isn’t over when our disease takes a lot from us, we simply have to survive, learn from it, adapt, and figure out what’s next. That’s what I’m doing.

Thanks for reading!
Devin

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Comments

View Comments (15)
  • baggie58
    6 months ago

    Oh, and I can’t even post a comment on here without adding all the rest of the stuff on my Notes scraps page where I’d roughed out a draft; dontcha just love cut and paste when cutted and pasted by someone with a very foggy brain ……. made myself laugh, anyhow

  • baggie58
    6 months ago

    Thank you for this article; of all the ones I’ve read recently that you’ve written this is the one that resonates most. I am in a slightly different situation to you in that I wasn’t diagnosed formally until the age of 56, after the medical community faffing around for several years until they discovered what was wrong with me. They went through these (amongst others): coeliac disease, ME, POTS, serious iron deficiency. Work (I was a library assistant in a college library) was slightly different; they thought lazy, workshy, always off sick, yada yada – you get the picture. About three years before diagnosis I finally found the job that I’d been looking for for years; running a trade union branch, based in a university. So of course the MonSter struck, struggled on for a year trying different options: reducing hours, working from home, but eventually the cognitive effects meant that had to retire.

    I have a husband, I have two daughters and four lovely grandchildren. I have two cats and we rent a small house in an idyllic English village. But, yes, what am I For? I feel I have no input into life anymore. My husband works hard every day and then comes home and tries his best to cook, though he hardly ever has in his life, and then collapses on the settee, exhausted. And I sit there, unable to do a damn thing.

    So what am I For? Daughters and grandkids live too far away; I can’t even look after my elderly mother, which I’d always promised I would.
    So what am I For? I’d like to know, seriously.

  • OliviaJ
    8 months ago

    I had the same rotten experience — having to leave work too early because of MS and its effects. It’s very hard, but maybe necessary, to let go of things that once mattered. I used to be a book editor. While I had to say good-bye to that, I can still read and talk to other readers. I’ve also come to appreciate that my purpose in life is just to be. Everyone’s purpose in life is just to be. Very simple and incredibly difficult at the same time. I enjoy your writing.

  • Devin Garlit moderator author
    8 months ago

    Thank you OliviaJ, MS really does test our ability to adapt, and to be able to let something go and then start a new.

  • susana
    8 months ago

    This is spot on (for me). This year has been a stressful year for me at work. I was explaining to my husband that I don’t want to quit (I think he assumed I don’t want to work)… that I need to work, but the stress is too much. I gave work a wake up call by giving my notice, but they asked me to stay if things changed…so far so good. I hope quitting, but not quitting does not come back to haunt me.

  • watergir1
    8 months ago

    Devin, I wish I could write like you! Maybe that’s part of your purpose; to put into words feelings that we share but don’t have the talent that you have! Take care!

  • Devin Garlit moderator author
    8 months ago

    Thanks so much watergir1! That is something a number of people have mentioned to me since this post went live!

  • Lizzy86
    8 months ago

    But as I was diagnosed pretty young, I feel like I just finished school, then collage, then got sick, it has been quiet a while now I guess, but just filling time with Hosp apt’s, left not much time for planing for a family and such, when did I miss that bit??

  • Lizzy86
    8 months ago

    Thanks for this post, I’ve been waiting for a post like this as I feel so irrelevant after so long being so unwell, your jobs gone along with trusted friends, but still keen to work, it’s just a horrible situation, what now?

  • Devin Garlit moderator author
    8 months ago

    Thank you Lizzy86. The thought of “what now” is something that plagues me often. Oh the good days, I try hard to look at that as an opportunity, I have most definitely gotten into and experienced some things that I never would have had I not be forced into this situation. That can certai9nly be a positive if thing, if you let yourself appreciate it (which,m admittedly, I don’t always do)

  • Harleydog1
    8 months ago

    I feel the pain from head to toes. This is not the club I apply for. The pills are make me feel like I’ve been hit with a Bay. I just hope the Medication will work

  • cmonteressi
    8 months ago

    Your article was insightful I can relate, I too am single and frustrated with what MS has done to my career. MS has taught me what I can do now. I went as far as I could and got a doctorate in engineering. Currently, I’ve taken a step back and determine ways that I can help others using my knowledge. Even though I can no longer ride my motorcycle or hike I am able to use my knowledge to help others with a disability. I’m not inactive however my energy is redirected from the first career that I was in to helping others.

  • Devin Garlit moderator author
    8 months ago

    Thank you cmonteressi, appreciate you sharing! You’ve got a great attitude!

  • sevensix
    8 months ago

    “Losing” my job to MS was, to be candid, providential. Job was stress, deadlines, lengthy narratives, court appearances, hostile people, push push push, I was questioning my sanity to survive another 17 years chasing a pencil across the broad expanse of refined papyrus. I said goodbye job, hello replacement; I’m gone as I hobbled out the door into my car headed for home.
    I landed my first real job with benefits at age 32. Eight years later medical retirement put me out to inviting pastures. Income nose dived steeply but we managed on scant rations with no one hungry for more albeit in a land of plenty.
    Pushing paper wasn’t fun although pushing myself in a wheelchair was hilarious. Take for example free wheeling down the jet way to the waiting aircraft I got going too fast crashing into the wall
    making quite the scene for me and airline staff running to see if the screaming idiot is OK to board the aircraft or an escorted ride to the clinic.
    That was fun. MS is not fun. MS crashes are not fun.
    Another occasion I was cruising across RR tracks at a pedestrian crossing when my front caster wheels got wedged between the track and wooden tie, and the train bearing down on me albeit very slowly gave me an instant vision of RR pizza aftermath. I was rescued by a kind gentleman who saw my plight pushing me onward and out of danger.
    Our purpose in life is a dynamic constantly changing for good, bad, or otherwise to keep us focused. I’ve got bad stories, too, but their telling is not fun. Maintain levity. It is good for you and yours.
    -sevensix

  • Michelle
    8 months ago

    I’m just reaching this point right now. Partly because there has been a change in management who decided I needed to be it of the office A LOT more, and no, he didn’t see to it that someone else was doing the office stuff. It’s a long story, but I basically had the worst exasperation I have ever had (to the point where I couldn’t move), and I haven’t been back since. Thankfully the company has both short term and long term disability, but it is a 40% reduction in pay. (I’m happy to get that, really.) Now I’ve got to figure out how to make ends meet, and what to do. Work and my dog have been.keeping more going since I can’t bike, hike, and the other active stuff of always enjoyed. My daughter.is grown and on.her own. I might eventually more back closer to home and family, but other than that, I feel stuck in limbo. (I live in the mountains of Colorado whole family is in WI/MN) I’m all for realistic ideas to get past this.

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