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Chronic Illness and the Burden of Unfulfilled Potential

Recently, I was going through the various comments on my articles. I came across a comment from someone lamenting how their life has changed because of MS, particularly with regards to their career and future.  They even dropped a fairly well-known quote (at least some version of it) on me: “Unfulfilled potential is one of life’s greatest burdens.” That hit me hard. That is a burden that I carry around with me every single day.  It’s one that gnaws at me when I least expect it, it’s something I even lose sleep over. It’s hard not to look back at my life with MS and feel like the disease robbed me of fulfilling my potential. That’s a really tough thing to live with day in and day out, and I’m sure it’s a burden that many with this disease bear.

My story

I was young when I was diagnosed, still very early in college. Though I’d miss periods of time with exacerbations and other issues, I was still in pretty good condition most of the time. I was one of those early “Relapsing-Remitters” who would, at least appear, to recover between exacerbations (though the damage done in the relapses would eventually add up). So I was able to get through school, start my career, and even excel in it before my disease would land me on disability in my 30s. It really did feel like my illness would be more of an inconvenience at times and something I could manage, something I’d recover from each time. As I said though, exacerbations added up, I went a few years without a disease-modifying therapy (where I felt fantastic at the time, but paid the price for; remember, this disease can be active without you realizing it), then that was it. Even though I’d accomplished a lot, I was still very much on the upswing of my career when my body started going off the rails.

My disease forced me to stop working

With regards to my career, I felt like I was fulfilling my potential. I admit, I was (and am), extremely lucky. I grew up in an upper middle class home, with parents that are still together, who cared about me and my siblings and did all of the things you might expect. I was loved, I had an exceptional education, opportunities galore, and still managed to stay, (I like to think anyway), humble. My parents gave me and my siblings everything you could possibly need to get a good start in this world and at the same time reminded us that we were lucky. They both worked hard to give us what they didn’t have and I’m very thankful for that. In some ways though, that’s one of the reasons this issue of potential hits me so hard. When my disease forced me to stop working, not only did it feel like I had squandered my own hard work, but my family’s as well. That’s a hard burden to bear, one that still stings me.

Feelings of failure

I know, I know, I shouldn’t feel this way, right? I didn’t squander anything, I got sick, it was something I couldn’t control. It’s easy to say that, but when you are in my shoes, it feels much different. In my case, I obviously know I screwed up not taking a disease-modifying medication for a couple years, though that was mostly because of an insurance issue that couldn’t be helped. Even if I didn’t have that snag though, I’m sure I would still feel this way. When you’ve planned and worked for something your whole life, how can you not feel like a failure when in that situation, no matter what the cause? Saying it isn’t my fault doesn’t make me feel much better. Sometimes, I kind of wish it was more my fault, I wish I had caused myself to be in this situation, at least then I could at least own up to it. I could admit to something and be able to move on. Instead, I have this nagging feeling of failure and I can’t even properly assign blame. I can’t properly get closure on it, so it stays with me, and I’m left wondering what could have been.

Moving forward

Thinking about what could have been can really mess with your head. I think it’s especially common for those that have had an illness rob them of their life, well, the life they expected to have anyway. It’s hard to not constantly be mourning what could have/should have been, had this disease not hit me. It really does take an active approach to stop looking back and start looking forward. Even then, no matter how positive you are, no matter how in the moment you are, there are going to be times when you find yourself looking back and wondering. That’s especially true if you are stuck at home and not working. It’s OK to think about it sometimes, but it’s important to remember that the future can still be bright. Sometimes you have to accept that what could have been wasn’t and it’s time to move on. Having MS means we have to work a bit harder and adapt to what life gives us. That may mean we don’t have the life or career we always planned for, but that doesn’t mean our life can’t be even more worthwhile. That said, if you are weighed down by that burden of failed potential, know that you aren’t alone, a lot of us still deal with that, no matter how happy we may look.

Thanks so much for reading and always feel free to share!

Devin

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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

  • CatDancer
    3 months ago

    This is a great write. Lately, I have been faced with grieving for the future, for the things I always wanted but will never have. I couldn’t and can’t figure out how that’s possible–to grieve for something you never had, or know of having. But, there is good in our future, even if it’s not the way I had envisioned it. I was taught to work really really hard and then you will be “okay”, you’ll be successful. Well, I worked really hard throughout my 20s and got me a few degrees, like you. It’s strange though because what they said wasn’t true. Work really hard and you will be successful and “okay” and happy. Not to say that we shouldn’t find a passion and work for it but I wish someone would have told me to enjoy the ride while I was working towards the goal. I never really cherished all that I had gained because I was so stressed out trying to get something finished and accomplished–to get to that end. I got to the end but then I got sick before I could behold my Manifest Destiny.
    And what’s the point of working really hard if you’re not enjoying yourself at the same time? I actually tell my friends this now when I see them in a work or school grind.
    Maybe this is one thing MS did teach me.
    Love your stuff Devin. Keep on.

  • Devin Garlit moderator author
    3 months ago

    Thank you so much @CatDancer

  • cubbers1
    3 months ago

    I was diagnosed 27 yrs ago, continued to work until 65 (2 yrs ago). Desk job, self employed tax CPA. Power wheelchair only. Biggest regret : can not help, babysit etc. for my little grandchildren. Can’t even hold for any length of time. Bigger regret than not being able to stand, walk, drive.

  • Devin Garlit moderator author
    3 months ago

    Thank you @cubbers1, very sorry to hear that

  • Legsonstrike
    3 months ago

    Another good one Devin!!

  • Irishmar8
    3 months ago

    Great article Devin!
    When I start feeling sorry for myself for having MS. I must remember how lucky I really have been. I’m 61 now, was diagnosed at 46 in 2004, and had no relapses or bad symptoms in my first 10yrs after diagnosis. I had a career lasting 35yrs. Went on disability in 2014when I couldn’t juggle or multitask anymore-and heat intolerance and fatigue became overwhelming. I had a good disability benefit being in management for many years.was have a 35yr long career. I have a loving husband. Will be married 40yrs in September. We have two wonderful, kind, independent and educated daughters. Married, working and in their 30’s now. We have a 2yr old grandson and a 4yr old granddaughter. They have our hearts and they live close by. My son in laws still remember me when I was able to walk, I was always energetic, optimistic, and fun. I had this energy right up until I was 56. That’s a long good life with no symptoms. My friends and siblings I always tell to remember me how I used to be. It wasn’t that long ago. My mom had MS in the 60’s. I was only 7 with 4brothers aged-5,9,17, & 20. Her case was progressive and she was in a wheelchair permanently by the time I was10. I loved her silently from afar. Her cognitive self was so disabled my memories of her seem like she was always that way, like a sick grandmotherly figure that couldn’t do anything or even discipline or give good advice. When I’m feeling sorry for myself, I just think of her. Nothing was accessible, there was no sounding board or help, she never left the house, never complained, and her children avoided her as a defense mechanism. If I had my life to live over knowing what I know now, my relationship with her would be totally different. I feel guilty but I was just so young and didn’t understand. Nobody did back then. No AC, no meds, no help. She didn’t dance at my wedding or help me plan or pick out a dress. I danced at my daughters weddings and even went to their bachelorette parties. I got me BS In management when I was 52, I didn’t need it, I just wanted it, I had MS but no symptoms after presenting with optic neuritis which got better.
    I’m thankful for my long life of health and good times 56 yrs of being a good mother, wife, sibling, and friend. I still am those things minus the health. I use a power chair but I can transfer to bed and chairs ok. I have serious fatigue, as well as heat intolerance, weakness, drop foot, anxiety depression cognitive decline, neurogenic bladder, constipation, the whole gamut of MS symptoms. But I’m aging with it so it is progressive now, not all my life.
    My favorite people call me Nana. They don’t notice my disability they love climbing on my lap and riding with me. I am blessed.
    Marianne

  • Devin Garlit moderator author
    3 months ago

    Thanks so much for sharing @Irishmar8!

  • ornelasjer
    3 months ago

    My name is Jerrica I have had MS over 4 years but barley got diagnosed 9 months ago I have also had to stop working i feel most days this has robbed me can’t do the stuff I used to do any more love to workout can’t! Reading a lot of everyone story’s a lot like mine I thought I was alone sucks going everywhere in a wheelchair my son is 14 went to register him for school never forget what he said why do I have to push mom cause I was in a wheelchair he told my mom I never asked for this broke my heart! Most days feel empty like nothing don’t know how to feel anymore

  • Devin Garlit moderator author
    3 months ago

    Thank you @ornelasjer! Hang in there, as you’ve seen, you are from alone!

  • Dede74
    3 months ago

    Devin,
    I have to say I am so glad you wrote this article, because recently I went through an interview for my Veteran’s Disability Benefits, and was asked a particular question. He asked me what is it that depressing me about my MS??? Of course in my mind is are kidding me right now my thoughts of my future, and of course what I was able to do in the past. I was able to accomplish after 15 years of active service to go back to school and get my B.S. in Environmental Science. Something I always wanted to do, needless to say this was over 4 years ago. Of course once I received my degree the lovely beast that lives inside of me, decided it would be a wonderful time to bombard me with all new symptoms I never experienced before. Thus, I never got to apply this degree, never got to work in this field which I so desired, and never will. I did not let it hold me down though, I am pretty stubborn that way, I found other ways to still apply what I absolutely love, by volunteering with my local zoo in conservation program with Whooping and Mississippi Sandhill Cranes. I have gotten to help raise baby chicks, play the role of crane mom, and all around still be out in nature when the heat allows me to. (New Orleans that is not very often) Since I have had MS over 11 years now I am afraid because I am now having yet another round of symptoms of weakness in my arms, especially right one where I am starting to lose function. It scares me so, but your article just gave me hope, it let me know I am not alone. Also that we can all keep finding things that will continue to help us feel better about ourselves. Thank you Devin.

  • Devin Garlit moderator author
    3 months ago

    Thank you @Dede74, appreciate you taking the time to sharing some of your story, it’s helpful for others to see that not alone, that there are others that actually do understand.

  • MoonShadow
    3 months ago

    I had to stop working five years ago due to severe spasticity. The school district declined to accommodate me any further, so my teaching career was over. I didn’t even know how to stop working. It was one of the most difficult times in my life. I have had MS for 15 years, and I hadn’t had a relapse For about 13 years, when I was on IV I G. I was changed to Rituxan, and 10 months later, the third week of this last man for about 13 years, when I was on IV I G. I was changed to Rituxan, and 10 months later, the third week of this last May, I had a relapse. A big relapse. I could not walk. I have since learned that when you change to a monoclonal antibody, that you are fully covered until you’ve been on it for one year. I’ve been on it for 10 months. I have lost about 50% use of my right leg and maybe 10% of my left. I am in rehab, add it is hard. I was already using a walker and my legs were weak; There were other issues involved and this was a severe relapse. For the first time I not only grieved, I became severely depressed for a while. I did talk to my doctor about how bad it was, So don’t go getting worried! MS is the thief that steals your life. Right now I can’t even get out my front door because this is a step. It’s a long way to get around to get to the garden I planted the week before the relapse. Hopefully I will regain more strength and mobility as I go through this delightful rehab. I call myself Moonshadow here as that is my song. It’s hard to imagine a cat Stephen wasn’t thinking about MS when he wrote it. If you haven’t heard it, listen to it. Be well and keep up the fight! This is one of the best articles I’ve read here that really expresses what it’s like when you have MS and it steals your life. Thank you so very much for sharing.

  • Devin Garlit moderator author
    3 months ago

    Thanks so much for sharing some of your story @MoonShadow, it’s always appreciated!

  • Hawkeye
    3 months ago

    “Of all sad words of tongue or pen, the saddest are these, ‘It might have been.’ ”

    From the poem “Maud Muller” by John Greenleaf Whittier

  • Devin Garlit moderator author
    3 months ago

    Thank you @Hawkeye, so true!

  • Yoshitail9
    3 months ago

    Hey Devin
    Another great article that hits home with all of us. The loss of potential not only applies to our working careers but also to all the social things that we are unable to participate in. To me it’s a CONTINUOUS mourning process because unlike the death of our bodies when that time comes, the “death” of the potential of what could have been never subsides. BUT we must go forward with our lives and be thankful for the GOD given things we can still do, no matter what those things are, such as your ability to write with such meaning and thoughtfulness for our community.

  • Devin Garlit moderator author
    3 months ago

    Thank you @Yoshitail9!

  • chong61
    3 months ago

    Devin,
    I know what you are going through. I owned 2 Insurance Agencies (property and casulaty), plus I had a Real Estate Broker license. I found myself struggling to even quote a car policy and to put that in perspective I was insuring a major college. My math just started drifting away and thankfully I had 3 employees that could do the simple policies.

    It became such an ordeal for me from frustration to shutting my office door and sobbing. I talked to my favorite company rep. and he advised me to sell both agencies and he found another agency that was looking to buy and merge. So, in a short month I did just that and walked away from what I had loved for 20 years.
    I sat and did nothing for several months. Did not renew my Broker License, I knew I could not continue.

    I finally sought answers and was told I had MS. I sat for several months and my world was drifting away as I cried.

    I just want to stress to you that when I found this site and your article, the very first one I read. I remember writing you and saying “finally someone knows what I am going through.” Thank you, thank you for your post.

  • Devin Garlit moderator author
    3 months ago

    Thanks so much @chong61, as you can see, there are many that have gone through exactly what you have. We’re not alone and some days, that seems to make such a huge difference!

  • Jbrown38
    3 months ago

    I can relate. I wanted to go back and my co-workers said I was crazy. I told them to pray REALLY hard to switch places with me and they’d soon see this is not what you want. I was a Correction’s Officer, that had to take early retirement; and was only 8 yrs away. BUT, EVERYTHING HAPPENS FOR A REASON. Just taking things one day at a time. I’M GOOD, BLESSINGS TO ALL.

  • Devin Garlit moderator author
    3 months ago

    Thanks for sharing @Jbrown38 , very much appreciated, sounds like you have a great attitude!

  • RossB
    3 months ago

    As always, well said Devin! It’s been a little over 8 years since I last worked. I had been steam-rolling toward advancement in my newest, and inevitably my last, company when MS decided to have its way with me. After a brief stint on Short Term Disability, I went back to work and made it thru (hobbled thru is more like it) almost another year. During that year I burned thru my Paid Time Off quickly. The company tried valiantly to accommodate my physical needs (it didn’t hurt my case that the company’s president’s wife was living with MS), but there came a time when I knew that it was diminishing returns for both myself and my employer.

    Just after I was struck, I made a confidential, non-written agreement with my immediate boss. And that was if he noticed any significant drop-off in my performance, I asked that he tell me before I cost any of our projects any significant set-back. I ever let it get to that point. Having realized that 4 months into a new year not having any PTO left for the next 8 months, the chasm was just too wide and the evidence too stark for me to continue collecting a check and benefits that were both quite generous for what I felt was a diminishing return from me.

    So, for a while I felt Noble. Then Guilty. Then finally Resigned to fact that I did the right thing by the company I liked, and by myself and my family. Yes, there are dark, difficult days, but they are MY days now and I intend to live them as fully as possible.

    Thank you again Devin. I so enjoy your articles!
    -Ross

  • Devin Garlit moderator author
    3 months ago

    Thank you @RossB! I’m glad to hear how your employer handled the situation. We so often see horror stories, but there are some good companies out there. I was very fortunate in my years to work for some as well and definitely felt some guilt because they did do as much as they could for me. Thanks for sharing your story!

  • gil8817
    3 months ago

    I feel like you wrote this article just for me….Thank you for sharing

  • Devin Garlit moderator author
    3 months ago

    Thank you for reading @gil8817 !

  • asapcynthia
    3 months ago

    No matter what, we got robbed. There are plenty of regrets for things I always wanted to try, but never did, and now can’t. MS blew me way off course into uncharted waters. So we ‘re’ redefine, recreate, reapply, readapt. Two letters that change everything. I once wrote about my grief at not being who I planned on being. I mentioned that loss to my daughter, and she said for her entire life I’ve always had ms so it wasn’t a big thing to her, she’s never known me any other way. So that’s that. I am what I am. Who is to say that even if I didn’t have MS I’d end up where I thought? I could be married to my boyfriend in high school. Now that would be a real tragedy.

  • Devin Garlit moderator author
    3 months ago

    Thank you @asapcynthia, and that’s the thing, we can have these feelings and acknowledge them, as long as we also acknowledge that we’ve kept going. Just because it’s not the direction we expected, doesn’t mean it’s the worst direction.

  • JoFoII
    3 months ago

    Hi Devin, great article. I understand well your feelings about lost potential. In my case, I did somewhat the “opposite” before the before symptoms really hit, but the repercussions are hefty.

    After having been diagnosed with R&R MS, I took a management consulting position in which I traveled several days per week away from home, family and loved ones (that likely was a factor in a later divorce among other things), completed graduate school, and then moved to several other management positions that kept me at the office 60+ hours per week. I “over did it” to the detriment to my long term health. Further, I never said a word of the MS to my employers, and I asked that my condition not be discussed by my family (parents and siblings) outside of my presence. I thought it was best for my family (children) since it was “my” own private war. I never thought about the repercussions on health or support systems. Not only did I not mourn, but I did not give my family the opportunity to mourn either.

    Looking back, I am happy to have had the professional opportunities that I am sure would not have been available had I shared my MS story. I met and worked alongside some of the greatest minds in commerce. However, business is business, and big business can be cut throat. I have been on both sides of the cutting. However, I would have liked to have shared my condition with a few of my mentors and colleagues. I would have liked to have had their counsel in my decision making processes. I am sure it would have helped. That’s where my mourning lies…not having trusted that I could move my life forward with MS and work or exist with these same people.

    After 20+ years with MS, I still work, but at a much slower pace and with people knowledgeable of my condition and my limitations. The health implications hit harder now. I am remarried. Some prior friendships and business relationships were bruised deeply, even fractured, along the way. I am not sure which is worse, to not fully reach our potential, or to not reach fully for the potential at all costs? What do you think?

  • Devin Garlit moderator author
    3 months ago

    Thank you @JoFoll! It’s a tough question, I was always a pretty that was pretty motivated by my career and I too had a lot of success, but when you are like that, you always think there can be more, at least that’s how I felt. I can look at my career and say, hey, that was pretty good, but I know it could have kept on going too. I certainly made some choices along the way, that may have not been the best for my personal life, even my health. I don’t regret those decisions though, because at the time, they made the most sense. That includes leaving a pretty cushy position at a large company (with amazing insurance) for high position at a start up, one that didn’t include insurance. It was a smart move career wise but no doubt had long term effects on my health. It’d be easy for me to sit here and curse a younger and career climbing me for not doing what many would have considered the “right thing” (I did have MS at the time and the move meant no DMDs for a while). I don’t regret it though. I think it’s easy to look back on our decisions and say, oh, I wouldn’t be in this situation if I’d have done it differently. That can drive you crazy though. Maybe trusting you colleagues more would have helped, but you don’t really know that, no matter what they’ve said after the fact. You can never really know, it could have just as easily turned out worse. Bottom line, when we don’t trust someone with something, there’s a reason for that, we may not fully understand it, but usually, somewhere in your mind, you have a legitimate reason. Don’t let hindsight negate the validity of that decision because your brain was doing the best it could with the information it had. And as for prior friendships and relationships, it’s important to remember that MS or no MS, involving people or not, those relationships could still be fractured for other reasons.

  • Airtripper.NZ
    3 months ago

    I carry this constantly, however because there were no DMT’s available to me for the first 14 years after diagnosis so I also carry the burden of anger and frustration.
    Being from such a small country means the medication available for PwMS was until recently, very, very limited so the only option I had was steroids during a relapse.
    So I have been unable to work for around 8 years. My fatigue has been the number one factor, but my cognitive decline has meant I can no longer concentrate enough to even enjoy reading or studying or learning anymore.
    The grief I feel every day is compounded with anger over the unfairness of not being given a fighting chance to delay my decline.
    And yes, I am often told that I should be proud because I have raised two incredible children by myself (one doing her Masters degree, the second heading to University next year), who are both determined and successfully negotiating their way as young women, however I wonder what could have been if the three of us hadn’t had to struggle at every turn.
    I have so much regret.

  • Devin Garlit moderator author
    3 months ago

    Thank you @Airtripper.NZ, I’m sorry to hear, but I certainly understand. If I’d had access to the medication they have available these days, my life would be much different too. That’s why I write often about the importance of disease modifying medications. It still boggles my mind when I see so many people shun medication.

  • booker
    3 months ago

    Thanks Devin!
    For years your writings have helped me deal with my situation. And I’m only one of very many. Really, what an incredible accomplishment! Obviously it doesn’t lighten your symptom load, but touching and helping so many has to be near the top of human potential fulfillment.

    I also thought that I could just manage away the limitations and fatigue. No.
    Yesterday my neurologist declared me unfit to keep working and today I informed MIT that after 15 years I was finished teaching.

    So, once again the timing of your piece is right on the money. I know that I’m not alone. And I know that there are still meaningful paths.

  • Devin Garlit moderator author
    3 months ago

    Thank you for the kind words @booker, very humbling and appreciated. I’m sorry to hear of your situation. Remember though, that one it may seem like the end of one journey, it is the beginning of another. One that can be even more fulfilling. A change, unexpected for sure, but still a change, not truly an end.

  • Jennifer
    3 months ago

    Oh how my heart goes out to you. I went on disability about a year ago, and part of metlife’s requirements were that I apply for SSD. So I applied, knowing that nobody ever gets approved on the first try for SSD. And who got approved? Me. I’ve had Ms since 1998. And worked up until about a year ago. When I got approved I knew because I opened my bank account, and there was thousands of dollars in there that weren’t there before. I saw where it came from, SSD and I was pissed. Because it made things real. I kind of felt like I did when I got the insurance check from my husband’s death a few years back. I didn’t want it. I’m still working on acceptance of this. I commend you for listening to your doctor. Because I didn’t for a couple years. Work was stressing me out and my husband died, so I had to work. Guess what more stress LOL. So each day I’m working on finding things to be grateful for. And I tell you what I have a shit ton of things to be grateful for. Excuse my French I like to swear. LOL. I have two healthy grandson’s a healthy daughter, an awesome community of friends around me. I’ve been clean and sober from any kind of drugs or alcohol for over 25 years. And I just have the gift of life. I pray for my higher power to show me how to live in this new body. I have to look at what I can do not what I can’t do. I hope I wasn’t a downer. I just want to tell you you inspired me a whole lot. Jennifer

  • booker
    3 months ago

    Jennifer, you’ve overcome some serious obstacles!
    And how great to have a family and community for support. We all know that It’s not easy maintaining those connections while dealing with our MS.
    I also have to apply for SSD as part of my employer’s LTD plan. Not looking forward to it.
    Like you, I’m also still in a bit of denial…

  • mswarrior78
    3 months ago

    I am at the point where I have a decision to make. Making mistakes and unable to think clearly. This was a good article. Thanks for sharing!

  • Devin Garlit moderator author
    3 months ago

    Thank you @mswarrior78, I wish you luck with that decision. It’s not an easy to make to make, but, it can still be a new beginning and not really an end, if you let it be.

  • Dimitri
    4 months ago

    Ditto.
    This article hits too close to home.

    For me, the biggest regret is not listening to my gut. I should have known that there was something wrong with me, but I put all of my trust in doctors. For years the doctors would say anxiety, depression, and stress. By the time I was officially diagnosed my brain was considerably atrophied for my age and I had several T1 lesions. By that time it was from diagnosis straight to disability.

    Now I lost everything and the world just won’t stop spinning.

  • Devin Garlit moderator author
    4 months ago

    Thank you @Dimitri, whew, I’ve had some moments thinking the same thing. Listening to you gut is very underrated.

  • @masbrautigam
    4 months ago

    Great article:) this is indeed a problem for me too, although I constantly hear how long cky i am that i can still do a lot of things, there are also a lot that I cannot do. Just because my MS is mild doesn’t mean I don’t have these issues you mentioned. I do think of my times when I played tennis, just drove my car without being scared and social events were no issues.
    At home these play in my mind more.

  • Devin Garlit moderator author
    4 months ago

    Thank you @masbrautigam

  • faroop
    4 months ago

    Great article — I can totally relate to that feeling of lost potential.

  • Devin Garlit moderator author
    4 months ago

    Thanks @faroop! Hate to hear you know the feeling, but at least we know we aren’t alone!

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