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A woman sitting alone in the dark.

When You’re Fighting Alone

Living with a disease like Multiple Sclerosis can be a difficult task, particularly as you grow older. Having a good support system is crucial to living successfully with this illness. Not everyone has that though, and for some people, like myself, even having a good support system doesn’t mean we don’t sometimes feel like we are fighting this battle alone. I talk with a lot of people with MS, and I am often left with the thought that I have an interesting perspective as someone who has had the disease this long, is this age, and is single. With no family of my own and a career taken by my disease, I find that I face some struggles in ways that others don’t. So, I’m here to share, primarily because there are others like me, and no matter how minor we are in the grand scheme of MS demographics, you need to hear that you aren’t alone.

Making a lonely disease even more lonely

As I write this, I am 41 years old, I have had MS for close to two decades, I am single, unable to work, and have no children (though I very much treat my dog as my child). It can be argued that Multiple Sclerosis played a pretty big part in my current situation, but that’s not the discussion point here. Rather, I wish to discuss the difficulties that come with all of this. There are many times during which this combination of life statuses can weigh on me. In short, it can make a lonely disease seem even more lonely. It can also really make one feel like giving up and like there is nothing worth fighting for. I feel like I constantly have to manufacture extra motivation to keep on keeping on and to do the things I need to do to keep this disease at bay.

Losing my career

There was a huge chunk of my life where I poured my heart and soul into my education and then my career. My career was something that defined me, and I loved it. I was one of those lucky people who had a job that wasn’t a job to me; I thrived at it and genuinely enjoyed my work. In many ways, I am still mourning the loss of my career. It was something I devoted a lot of time to, something I was proud of. I guess without it, I have a lot less to be proud of, at least that’s how it feels.

A family of my own

That’s not the only thing I’m missing though. In what might seem like a surprise to many friends and family, I did always want to have a family of my own. As I’ve gotten older, I most certainly lament not having one. I feel like, especially what I’ve learned from living with this disease, that I’d have a lot to offer children in terms of advice. The reality these days is that I’m too old and damaged by MS to have a kid at this point. It’s OK, I’ve accepted it, that’s life. I do often think though that having children of your own must be a massive source of motivation if you have MS. When I talk to others who are struggling with the disease, I often want to grab them and say, “What about your kids? You need to pull it together for them; you need to go on for them!” I think that a lot when someone comes to me and tells me their spouse left them because of the disease (that happens way more than I care to think). I always think, but you have kids! No matter what happens to you, you raised or are raising these children, that’s something to be proud of! Perhaps that’s just the naïve musing of a single old man though (and sure, 41 isn’t old, but with nearly half of that life spent with MS, it sure feels much older to me).

Fighting to find the joy

As I said, I have a great support system. Wonderful friends (despite losing quite a few over the years) and great parents and siblings. That doesn’t mean I don’t wish I had more though. It’s hard to be motivated when you’ve no children, significant other, or even career. That’s kind of what I’m trying to say here. I find myself wondering why I am doing all this, living like this, dealing with the pain, falling all the time, the confusion, the being uncomfortable. It’s easy to ask yourself “what’s the point?”. Honestly, I still struggle with all of that, but that doesn’t mean I’ve given up, and you shouldn’t either. There are still a tremendous amount of joys in life. You may just have to work a little harder to find them. Maybe you get a hobby, or you help others, or maybe you even just take pride in fighting the disease. Just because you aren’t in the position that others are in, doesn’t make you any less important. Keep fighting and know that you aren’t alone. I have a feeling a lot of people are in the same situation as us.

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

  • Harry
    4 weeks ago

    I just don’t understand why people have to suffer from any horrible sickness. Your whole life gets screwed over by it.

  • potter
    1 month ago

    I wouldn’t beat yourself up to much on the children situation. Not all of them will help. My son and his wife don’t plan to be around to help they just want to travel. They returned from living on the island of Palau last October. His grandmother is ill and they need to build up their bank account. We have helped both of our parents since we were married with all kinds of things. They weren’t raised to be so selfish. Him and his wife aren’t having any children. So no grandchildren for me and my husband. Potter

  • Shelby Comito moderator
    1 month ago

    Hi @f5hwo4, thanks so much for sharing your experience and perspective. I can imagine it must be so frustrating and upsetting to feel like you don’t have the support and care from your children, especially after being so attentive to your own parents’ needs. Thank you for being so open and honest here. Please know we’re thinking of you and here for you! – Shelby, MultipleSclerosis.net Team Member

  • Devin Garlit moderator author
    1 month ago

    Thank you for sharing potter!

  • brewlabs
    1 month ago

    Devin:

    As always, challenges are unique to each of us. I am fortunate in many ways, I am still mostly able-bodied, able to work (albeit not as well due to vision and focus and fatigue issues) and have been pretty stable for the past year or two. Like I said – fortunate.

    At 55, I have two grown kids, parents, and some long-time friends. But I truly do live alone – as all of these support persons are scattered across the country. I also do my work from home so it is not at all unusual to not interact with people IRL for days at a time.

    But it truly is a challenge to meet people – and find purpose at times.

    Earlier today I had a realization prior to reading your article and it was this – I have made a big impact in so many peoples’ life – both work and personal.

    Impact matters. It is purposeful. It is empowering while simultaneously being humbling. Impact requires continual effort. Continual purposeful effort is not only its own reward but it takes you in new and unexpected directions. Our future paradoxically has more certainty and uncertainty due to MS. That’s why the journey matters.

    I have found so few persons with MS who have situations similar to mine – but nonetheless I have found almost every article you have written to resonate strongly with me. Your voice matters.

    Hang in there my brother!

  • Devin Garlit moderator author
    1 month ago

    Thank you @brewlabs! Very much appreciated!

  • chong61
    1 month ago

    Devin,
    How I wish I could share my family with you. I have 3 kids, 8 grandkids and 2 great-grand kids. We are an extremely close family and all of my group will do anything I ask of them. We share every holiday together as one big happy family that I struggle to understand and process what they are talking about most all day. They do not understand MS and they never will. You can read forever, but you have to have this ugly disease to really know what it is to your mind and your body.

    My grasp of my MS and my life changed 11-25-15 and is not repairable. My husband of 58 years died within 5 hours. He somehow just reached the most he could handle of MS that last year, but just being together made my battle easier. After that date I really wanted to die, but because of my family I am still fighting the fight. I live alone and consider myself lucky to still do that.

    When I go days without seeing a person I tend to wonder why I am still struggling. If not for my deep love and faith in God I might not keep trying.

    Today I just fell once, so I had a good day except for this knife stuck in my back and the jackhammer in my head parked right in front of my eyes obscuring my vision. As I said I am having a good day.

    I will be 77 this year so I know that the productive part of me is gone forever and has been for 20 years. Today I have been so lonesome and without my fierce Pomeranian I don’t think I could just find anything to smile about most days.

    I know I am repeating myself from some earlier posts, so please forgive.

    So, Devin to know you are 41 and already this deep into the nightmare of MS makes me sad.

  • Devin Garlit moderator author
    1 month ago

    Thank you @chong61!, I appreciate it!

  • poppydarling
    1 month ago

    Thank you for pointing out some of the unique challenges when you are an “orphan” and aging with this disease. It’s difficult enough when you’re in that situation and able-bodied! I don’t usually dwell in regret, and I definitely did not want children or a traditional family when I was younger, but I find myself dwelling on roads not taken that might have changed my current life. My blood relatives are mostly just that, and creating “family” in other ways used to be much easier, so that compounds the feelings of loneliness. I’ve struggled to come up with solutions but imo it’s basically an existential issue, one that I’m trying (not super successfully:-) to live with.

  • Devin Garlit moderator author
    1 month ago

    Thank you @poppydarling and @Tazz, always nice to know that others understand, though I’d never wish it on anyone.

  • Tazz
    1 month ago

    That’s me as well. It’s a very bleak tunnel to be staring down when family are best described as “blood relatives” – which is all I can offer when people ask me about the two (yes – two) “family” members I have – I’ve given up on maintaining a facade on “family” anymore – they don’t deserve me covering up their total disinterest in whether I’m dead or alive. It’s made worse when friends have dwindled over time down to single figures due to circumstances and MS. And having recently had to stop work I’ve found that I can go a whole week without seeing another person, and then that might only be the person on the checkout at the store – despite my efforts to try and be involved in things. “Solitude is a choice you make but isolation is imposed upon you” – and there’s a huge difference.

  • JUJUBEE6318
    1 month ago

    I hear you loud and clear Devin!

    I am a 59 y.o. female, and I was diagnosed with MS at the ripe old age of 36. I have now progressed to the secondary-progressive phase of the disease, and am currently awaiting my custom-built power chair. I have no parents, no children, am single with two cats. No… I am not a cat lady! I wish I could have a dog, but the care that a dog needs is much different than that of a cat. I’ve had dogs all of my life. I have tried 2 times over the years to be a dog owner, but found that it was too difficult for me, and unfair to the pups. They are each in very, very loving homes.

    I live away from a nephew who is young, and lives in NY. I have a brother, but we have not communicated for 6 years. There are other friends that I have that are not really nearby, and one neighbor who is a great help, but has a very active and demanding lifestyle, and needs to move away soon to help her aging parents.

    It is really tough at times. Really tough. I actually don’t know how I get through each day. Well, part of it is spent still working P/T from home on the computer with a company I have been with for 10 years now. (4-5 hrs./day early a.m.) They are a great company, and have treated me with great compassion and understanding. But working from home all alone has its own pitfalls.

    When I find myself beginning to feel feelings of loneliness or depression, I try to become still – Still mentally I mean. I focus on the present moment, and look around at what I have gratitude for. Meditation helps me a lot as well. As I am slowly growing more and more compromised physically, and things are harder to do, I try not to get ahead of myself mentally about the “what ifs”. That’s about how things are right now.

    Thank you for writing as much as you do, and for sharing your experiences and thoughts with all of us!

  • Devin Garlit moderator author
    1 month ago

    Thanks so much @JUJUBEE6318, really appreciate you taking the time to comment. It is tough, hang in there, and I’ll try to do the same!

  • Lily
    1 month ago

    Devin,
    I wish you could let go of the thought of you being damaged by MS. You, me, and others, we are not damaged. We may have challenges, but so do other people.
    Be kind to yourself. I appreciate you and what you bring to the community.
    When you share your stories, you bring comfort, connection and comedy to your readers.

  • JUJUBEE6318
    1 month ago

    Indeed!

  • Devin Garlit moderator author
    1 month ago

    Thank you @Lily!

  • StephanieEVC
    1 month ago

    Wow buddy!! all the words in your post describe myself to a ‘T’ in most parts anyway. I feel completely alone in any discussions about the multiple sclerosis. I also have no period to have and haven’t in my life ever been interested in having children. I got my first period very young at 9 it stopped suddenly just as fast in 2010. I had my dream jobs doing things that others found impossible, I cut on the band saw table saw moved mattresses did inventory counts exercised at least 2 hours a day Monday to Saturday then slowly found things very difficult, walking far grew impossible, holding onto boxes or furniture grew more difficult. I quit the filter manufacturer job before any serious accident could have happened I WAS ONLY THERE at the end cause my mom was, she quit I did too, the next month. My notice when I was warned that I had to was ‘ok youll notice that I was sick for a week, and I’ll see you next week to get my stuff and papers’.

  • Devin Garlit moderator author
    1 month ago

    Thanks so much for sharing some of your story @StephanieEVC, always appreciated!

  • SLewis09
    1 month ago

    Also 41. Lost a career and a marriage. The career is definitely and surprisingly harder. Being single is not the issue, feeling useless IS. Thanks for the article. 🙂

  • Devin Garlit moderator author
    1 month ago

    Thank you @Slewis09, I 100% agree!

  • LisaWoodSnead
    1 month ago

    I have had MS for 22 years and had my youngest at age 36. I felt the same when I had to stop working but agree my kids definitely keep me fighting. If you found a woman younger there’s no reason you couldn’t still have a child. I was diagnosed prior to kids and worried I wouldn’t be good enough, they both love me as if I weren’t disabled. They are 18 and almost 12, 2 boys. Don’t give up hope!

  • Devin Garlit moderator author
    1 month ago

    Thanks so much @LisaWoodSnead!

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