Did MS Ruin My Marriage?

Did MS Ruin My Marriage?

As I sit perusing my social media feed, I see several of my fellow MS warriors share a wonderful post from another MS website about a couple battling the disease together. She the afflicted one and he the doting, faithful partner. It’s a love story (and I confess, I’m a sucker for a good love story), saying how much they love each other, and how accepting he is of her disease. She talks about how she realizes divorce rates are elevated for those with a chronic illness but that they are doing great. It’s uplifting. Until I see a great picture of them after finishing a 30 mile MS Bike race together. At that point, I realize, while they’ve no doubt had challenges, they’ve only experienced the tip of the iceberg when it comes to potential MS-related relationship problems. I see posts like this often, the happy, “all is well despite the disease” couple. While that is great and hopeful, it can also sting to see, if you’ve been in the opposite situation. Where things didn’t work out. So I felt it was time to write about the other side of the coin, to show that having a relationship with a chronic illness is not easy and that it doesn’t always work out.

It’s not my intention to write a depressing article here, but I want to be realistic. While some people need to read about ideal situations and positive messages, some prefer to hear about everything, the good and the bad. The realities of life, no matter how rough they might be. I’m one of those that needs that, I need to see that other people experience the rough times like I do. I find some comfort in knowing that I’m not the only one. This topic of relationships and MS hits home a bit as my marriage has ended. I waited some time before diving into this because I needed time to reflect. I wanted as clear a mind as possible about the subject.

Did MS ruin my marriage?

Longtime readers of mine know Aimee, I’ve interviewed her and she’s even talked on video with me about MS and how it’s affected our lives. Many have praised her handling of life with my disease. To this day, I’m thankful for all the help she’s given (and still gives) me. Living with someone in my situation can take its toll though (as it has with other women I’ve lived with prior to Aimee). I can’t stress enough that it’s not any one person’s fault, at least not in my situation. I do think, however, that the stress and situations we’ve dealt with because of my MS did alter our relationship. Requiring help, constant memory issues, being seen in pain, being seen when I’m very vulnerable, mood swings, not being able to do the same things and attend the same events. The list goes on, and they all contributed a bit. I’m not the same person I was when we met, physically or mentally.

All of this took a toll on me, as well as on her. Over our time together, my condition slowly worsened, I fell out of shape, and I began a constant battle with the demons in my head. Being on disability has left me feeling inadequate in so many ways. As I’ve said previously, I was raised with a strong work ethic, I’d built a successful career, and it was a big part of my identity. Since that was suddenly stripped away, I’ve been lost. All of that had a massive impact on my marriage. So many times I would tell her how she deserved better. I put her on a pedestal, and so many times I felt guilty being with her because I felt like she deserved to be with someone who was her equal, someone better than me. In many ways, I pushed her towards this, I pushed her away constantly. I even encouraged her to be with the person she left me for, because I wanted her to be happy, and because I felt (ok, feel), like I don’t deserve that happiness (though I didn’t expect this particular outcome). As cliche as it sounds, I can’t help but feel like I did something to deserve my disease and everything it’s brought (and with that, that I didn’t deserve her). Even though I’ve counseled so many people with MS and assured them that they shouldn’t think this way, I still fell into that trap myself.

So did MS ruin my marriage? Not directly, but it ruined me, and then I ruined my own marriage. I’ve always felt that you can’t really be happy with someone until you’re happy with yourself first. When I met Aimee, I was very happy with myself (confidence hasn’t normally been an issue for me). By the time things really ended (and this was many months back now), I was very unhappy with myself. That kind of change can happen for a lot of reasons; for me, MS played a big part in that. So my feelings about myself, coupled with not physically being the same person where a perfect storm.

What now?

Well, my life goes on. Despite all the bad it’s done to me, my life with MS has made me strong, it’s made me a survivor. The first few months were rough, but I’m soldiering on and trying to build a life. I am still close with Aimee and I’m very friendly with her girlfriend. I meant all of those things I’d said, I’ve always just wanted her to be happy, and she seems to be. That truly does bring me some joy.

It may seem a little self-serving to talk about all this, but I do it because I know others might have something similar happen to them. Trust me, even many months later, it’s still not the easiest thing to talk about. Life with MS can have negative effects on relationships, not just friendships, but marriages too. Just know you aren’t alone. It’s not easy. If your relationship hasn’t been all wonderful and inspirational, that’s ok, and a lot more common than we’re all led to believe.

Thanks for reading!

Devin

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

View Comments (63)
  • Melissa R
    2 months ago

    thank you Devin. It helps to know there are people out there who understand.

  • Clarissa
    1 year ago

    Devin, thank you for writing about “the other side of the coin” so eloquently. You have a true gift, and you are using it to help others, which is a great thing in my book. As with you, I know MS played a big part in the dissolution of my marriage. My then-husband frankly said he couldn’t handle the prospect of me being “broken.” In the space of 12 months I had a very difficult birth of my only child, received the MS diagnosis while hospitalized not being able to walk due to an exacerbation, and caught my then-spouse being unfaithful. Don’t get me wrong–it was definitely the worst year of my life, but in a strange way it also made me a better person–it made me realize my own strength. Now when MS or anything else gets me down, I say to myself, “You survived that year, so you can survive this.” At first, I forced myself to live for my son–he deserved to have a mother, but soon I realized that I myself was worth living for. Just because I have MS doesn’t mean I’m “broken”– I’m strong because I know what it is like to be judged “broken” and be able to mend nonetheless. Years later, I now have a husband who knew I had MS when he married me, and loves me, MS and all. I have him in my life because I *want* him in my life, not because I need him–for me, the distinction is important. Is life perfect now? No. Is life sometimes difficult? Yes. But much love and joy and great things remain, and I’m glad that I chose to live.

  • Devin Garlit moderator author
    1 year ago

    Thanks you Clarissa! Your comments are inspiring, and I really hope that everyone that reads my article reads your comment as well! Thanks so much!

  • Carol
    1 year ago

    What a great story, thanks. I really saw myself with MS “ruined me.” Yup, that’s me. I was a happy person, I went to work every day, it was pretty much my first job, and then thirty years later, I started changing. All these different symptoms would hit me, and I would just brush them off, thinking that they would go away, but they didn’t, I just kept getting more symptoms and becoming sicker. Of course, doctors couldn’t find anything wrong with me. I kept on getting sicker and after going through different doctors when finally I heard one neurology say I had MS, oh my god. I screamed and cried all the way home. It has really changed me a lot. When I had to finally give up my job, I was crushed. I loved my job and all my friends and being useful. When I lost all that, I lost a great part of me. I wasn’t the same, I became bitter, depressed, mopey, had mood swings, a whole range of things. And my husband has to suffer through all my mood swings, anger, crying jags. That’s not me, I don’t want to be like that at all. When he leaves for work in the morning, I feel so isolated and lonely. I don’t know how long he is going to stay in the marriage. I don’t want him to leave, but I can’t blame him if he does.

  • Devin Garlit moderator author
    1 year ago

    Thank you Carol. I’m so sorry to hear of your situation. I think if you can take anything from my story, I hope that you see that it’s important not to push your husband away. No matter what, you are still the person he married and loves.

  • Kristina
    1 year ago

    Devin,
    Thank you for writing another great article! Sorry you have struggled, but thank you for sharing your stories. I have been dealing with some of the same issues and feelings after loosing my dreams of my career and Independence. Right now, I feel like I am floundering. I don’t have a dream or goal anymore. I feel like my ability to aspire to more than trying to combat the fatigue and pain, care for my dogs and try to keep up with laundry and cleaning, is more than I can handle at times. I get lonely and occasionally reach out via online dating. When I meet people, I have a hard time with the issues you mentioned. Either I like them and they deserve better, or I don’t think they are looking at more than my photo with a fling in mind. I still live as roommates with my recent ex. I broke it off with him when the stress of his life, with my added stress, seemed to become too much. When he heard I needed a roommate, he asked to move back in and he still helps look after me. He no longer has to see me in pain when he comes to bed, and says he does not feel so responsible for me. He has a wonderful girlfriend who doesn’t mind that we are still friends. I feel fortunate for what I have. So, I am back to trying not to cause harm, or be too much trouble. I am told I need to find a new goal or passion. After struggling so hard just to have had it all stripped away so completely, I feel like parts of me were stripped away with it. If I could be productive or reliable, I would not be disabled. I am too strong or stubborn to just give up. So, if a career is it of the question, then how about a relationship? It can be a fun diversion, but it isn’t a goal. How do you set goals when you know the actions or skills needed to achieve them are no longer available? I have always been better more comfortable with tasks than relationships. Perhaps this is what it takes to get me to focus on relationships? Is it fair to start new relationships knowing you come with such a Pandora’s box of challenges? I don’t want to have more parts of me stripped away if I put all of my focus into a relationship. That seems like a recipe for disaster, being overly clingy, depression etc. I would love to hear some advice. What do you do when your rudder was removed and your left sitting in a boat in the ocean? Do you really pick a new direction and try to reach it? Why? How? Do you just go with the flow? What do you do to keep from going crazy from the tedium? Sorry if this comes across as whining! I do appreciate your honest articles. I am just feeling a bit lost at sea. Thank you!

  • Kristina
    1 year ago

    Thank so much for writing back! Nice to know there are others out here in the same sea! lol Hope you are having a good fall so far. Kristina

  • Devin Garlit moderator author
    1 year ago

    Thanks so much Kristina! I have a LOT of moments when I feel lost at sea. When it comes to relationships, i too think, well, I can’t even work, how can I manage. I can barely care for myself and dog some days, I can I manage a relationship. I certainly don’t have all the answers, but I do know that it does work out for people in our situation. It maybe hasn’t for us yet, but that doesn’t mean it won’t. I think having gone through everything we’ve gone through does make us some special people, and some day, someone will realize that. I think if we focus on ourselves, and doing things that make us happy, it’ll eventually fall in to place. Sometimes when we’re lost at sea, we just have to pick a direction an paddle and see what happens. I wish you the best, I’m in the same boat, or at least in the same sea!

  • aasterisk17
    1 year ago

    Devin, Thanks for such a great article. I can’t tell you how many poor house-flies I’ve obliterated with rolled up copies of MS magazines with articles on couples battling MS together, not letting the disease stop them, doing bike-a-thons, etc. Not sure I’m fooling my kids, but I make an effort! I try not to show my real feelings in front of them, but they are getting older and see the situation for what it is. They know their dad walked out on us and they know why… I have pretty much declined steadily in the last 5 years. He never had to take care of me a day in his life – he left when he saw my walking decline and my job evaporate. Up until then, I made the same mistake many of us do — overcompensating by taking care of everything to a fault. He always said he was happy, that he was a simple man and that he’d let me know when he was unhappy. When I found out that he’d been cheating for the last three years of our 10, I was so angry (for many reasons), but mostly because he didn’t have the guts to tell me sooner — when I was still able to walk out on him (literally). That sounds childish, but I think many with MS know how hard it is to connect socially with our disabilities…I feel like I have been robbed of the chance I could have had to meet someone new. I wish he had been honest, I can never get that time back. On the flip side, I have learned a lot of new things that I probably never would have pursued if I hadn’t lost my job, and I am grateful for new beginnings. I try to think positively and find things to be grateful for everyday. I learned to knit and it has been a lifesaver…I know that sounds stupid, but somehow it is so therapeutic! I don’t have any family near me except for my kids, and it’s really hard to live on our own…at some point I will probably have to move back to where my family lives, on the other side of the country. Staying positive is so important, and every other day it seems I have to “fake it until I make it”. I don’t want to bring you guys down, a lot of you seem so incredibly positive. The one thing I think worth taking away from my ramblings is for people to be honest with each other. If you’re unhappy, talk about it openly; don’t do something you’ll regret. None of us deserve either side of this mess, it sucks.

  • Melissa R
    2 months ago

    Thank you so much for sharing such a personal story. Seems that “in sickness and in health” are just words anymore – to have the father of your children walk out on you all in such selfish fashion has to be devastating. I can feel things slipping away in my own relationship, and don’t know what to do. how can i take care of myself and my marriage when the healthy one can never truly understand what it is like to be trapped in this body? such is the life

  • Devin Garlit moderator author
    1 year ago

    Thank you aasterisk17, I’m so sorry to hear of your situation. I am lucky in that there was no cheating involved. I knew about it every step of the way (and I’m not sure if that’s better or not some days). I still have feelings like you do, why couldn’t I have been told or realized sooner what would happen? Why not when I was still in better condition than I am right now? Thinking like that can drive us crazy though. At some point, I know we’ll be stronger and even better for it, it just may take time to get there. I completely understand the knitting, I recently wrote about how I have taken on LEGOs and it’s provided the same sort of therapy for me. I appreciate you writing in and I hope for the best for you. There are a lot of positive people out there, and that’s important, but I always get something out of people being real as well. Knowing I’m not in this alone!

  • Hanging On
    1 year ago

    Wow. Thanks for this article. It could have so easily be written by my husband of almost 30 years in some not-so-distant future. I am really struggling with the change in our relationship. It is not just that the day-to-day is so difficult with a man with advancing MS, but that we just aren’t connecting the same anymore due to depression, etc. I, too, am frustrated by “making it” articles in which the MS person can ride a bike for 30 miles…this has been impossible for my spouse since the day he was diagnosed. I am still struggling on, trying to do the “right” thing… but I am not always sure that staying is that, if no one is happy in the relationship anymore. Anyway, thanks for sharing. I appreciate your perspective.

  • Devin Garlit moderator author
    1 year ago

    Thank you Lisa B. I’m very sorry to hear of the your difficulties. I agree that staying isn’t always the “right” thing. Sometimes love and feelings change as the relationship changes and it’s just not there anymore. I personally am not a big believer in forcing something to work if neither side is happy, but that’s me. I do recommend talking to him about it. I think there are so many situations that deteriorate because the significant other won’t talk to the person who is sick about it. It’s easy to fall into the trap of “I don’t want one more thing to upset them or hurt them”, but that’s not for the best. It’s OK to admit to him it’s effecting you too. It’s important to let him know that and to possibly even have both of you consider talking to someone. Had I truly realized my situation with my wife was going the direction it was, I’d have certainly tried something, anything to help. I thought pushing her away was the right thing to do for her. I think I was wrong about that now.

  • JanG6036
    1 year ago

    January of 2015 was the last time I saw the man I loved ( love ) and here it is sept of 2016 and I still love and miss him. My attitude changed and I became a bitter and angry person because of the changes that came and come with MS I lost my Job ( very good job in 2013) and haven’t worked after that. He couldn’t deal with the person I had become and I understand this I became abusive verbally and wanted to kill him for just not listening ( hands around his throat while in the kitchen )

    I was out of control and bad and with him having to work 2 jobs I had no one to help me which made me worse ( mentally )

    I lost not just him but everything except my car and my dog and how I wish I could change this ( no disability still fighting 4 years into it now )

    We are good friends but I have a portion of me that wishes I just would have died when I tried to commit sue-aside because this wouldn’t hurt me any more but I keep fighting even thought I have only my dog to stay around for ( MS is genetic in my family on my dad’s side and was caused by my mothers mother on my mothers side )

  • Devin Garlit moderator author
    1 year ago

    Thank you for reading and sharing some of your story JanG1360, it’s very much appreciated. I get it, I really do. There are times when I too feel like I’m staying around just for my dog and it feels pointless (until he cuddles up to me and then it feels like more than enough). I feel like I’ve lost everything and I feel it often. Oh the better days, I try to look at it in a different perspective though, I try to remember that things can and likely will get better. I scoff when others say that to me but I know it has to be true. It’s important to remember that this sadness, this hopelessness is part of the disease. I keep trying to tell myself that because putting it like that makes me more inclined to fight it. I wish the best and hope you keep fighting. Sometimes losing so much is a chance to start over, and that can be an incredible thing, a chance to make things even better. You should certainly talk to a doctor about these feelings though, remember, it’s part of the disease. They can provide some help. I hate plugging my own stuff, but I wrote this a bit ago about depression and these sorts of feelings. It’s an important cause to me and a much bigger part of the disease than most people realize: https://multiplesclerosis.net/living-with-ms/its-time-to-get-real-about-depression-and-suicide/

  • Rachelpcarter
    1 year ago

    Devin,

    I feel like I might be pushing my spouse away sometimes, and I feel guilty. I know I deserve the best, and I do believe my value as a person is equal to his – so I also get mad about him getting mad and frustrated when I have symptoms that make it hard for him (memory loss, fatigue, can’t pay bills or do paperwork, on disability.)
    I get confused about everything very often, but I know that I do not want to lose my husband!! He got me through the HSCT – he went with me to hell and back.
    But I have a very hard time controlling my anxiety and temper any more . . . damn frontal lobe lesions!!
    Can you give any advice for those of us who sometimes feel they are walking a thin line, and trying to hold on?
    Thank you for your host-story I think we all get sick of the BS ones like you don’t have any days that suck!! 😉

  • Devin Garlit moderator author
    1 year ago

    Thanks so much Rachelpcarter. I appreciate you taking the time to read and comment! The mood swings we go through are crazy, it’s got to be very tough on our loved ones. These days, when anxiety and even anger suddenly come on, I try to remind myself that it’s the disease and that I can’t let it win. It seems impossible sometimes. I’m an emotional rollercoaster. Worse yet, I feel those emotions and the outbursts they cause just aren’t me. I think it’s very important to be clear about that with those that are close to you. Make sure they know about these issues and that it’s not always how you actually feel. I think it’s important for them to know that we know these things are happening, even if we can’t always control them. I think an open dialogue when both sides are calm is extremely important. It’s a two way street for sure, both sides have a lot to get frustrated about. I think it’s important for both sides to recognize that and remember that it’s the disease causing this, not each other. The frustrations you have about him are every bit the effect of the disease just as much as your anxiety and temper are. It’s important for both sides to blame the disease, not each other!

  • Rachelpcarter
    1 year ago

    I made a lot of mistakes in that post – I should have read it first! Thank you for the honest story, is what I meant.

  • B.Catlin
    1 year ago

    In sickness and in health. My wife of 30+ years, M.S.er of 25+ years asked me awhile back if I felt remorse , maybe blaming her for the the hardships brought on by her worsening condition. I told her it was an understandable question, admonished her for her thinking I would ever have such thoughts, and told her truthfully I had never had and would never have those thoughts cross my mind .Is it hard, Yes. Is it difficult, Yes. Is it a strain on a marriage, Absolutely. Have I called my children and said I’m not coping well you have to come every now and then to give me a break. Yes this and many other things have been and will have to be done in the future. In sickness and in health. Do I have the right to complain? Yeah poor me, I’m not the one in the wheelchair, I have no complaints. Reading the article and the comments I am so sorry for the hurt, the heartache so many have gone through, but most seem to share a common theme. Selfish people that put themselves above the people they supposedly love. That’s not the way it works.

  • Devin Garlit moderator author
    1 year ago

    Thanks so much B.Catlin for reading and taking the time to share some of your life, I very much appreciate that. I will say this, caregivers, in my opinion, have every right to complain. OK, complain isn’t the right word. Perhaps “vent” is. The struggle that caregivers/companions go through is too often set aside, not only by others, but by themselves. One side of a couple being sick, in my mind, does not negate the issues of the healthier person. It doesn’t un-justify any problems they have. Not saying that you really have any “complaints”, but just as a general thought piggy-backed off your comment! Thanks again!

  • Braco
    1 year ago

    I feel like im heading down the same path devin.

    Your post, your condition, relationship, feelings, everything you wrote is an exact replica of my life

    Tony

  • Devin Garlit moderator author
    1 year ago

    I’m sorry to hear that Tony. I hope the best for you and encourage you all to be as open and honest about everything as you can.

  • Azjackie
    1 year ago

    Devin, Thank you for your writing. I think everyone craves not being the only one and inside their mind does not want to be alone. All diseases are difficult on relationships. Glimmers of light but a mass of symptoms, disabilities, and side effects emlihhten our wesknesses. Maybe as our population sickens we will all consider one another.

  • Devin Garlit moderator author
    1 year ago

    Thanks so much Azjackie!

  • marigoldg
    1 year ago

    My 2nd husband had died not long before I was diagnosed with Progressive MS. I truly believe that if he had been alive then, he would have stood beside me, behind me and helped me push my way through the good, the bad, the ugly and the inspiring. We had an amazing 15 years together through all of that anyway, since he had severe Type 2 Diabetes, and I had Systemic Lupus already.

    Two years after his death, I started a new relationship. Unfortunately, my 2nd husband had set the bar so high, I went into this new relationship with the expectations that this new person would also be supportive, loving and willing to step up when I needed help. I was wrong. When he realized how MS impacted me, he suddenly wasn’t as available, cancelled dates at the last minute and basically withdrew from my life.

    MS has changed who I am. Aside from the loss of my 2nd husband, MS is the only thing I’ve experienced that has brought me to my knees. I get told so often by people who know me casually that I am so strong, that I have a great attitude, that I am so brave … blah, blah, blah.

    What they don’t see is that I’ve gone from being an independent, confident, accomplished double-licensed medical professional to someone who loses words, falls frequently, has difficulty walking and feels like I have Swiss Cheese memory syndrome. And that’s the short list.

    I know there are thousands of people with RRMS who are able to carry on a relatively regular life after diagnosis. And I don’t begrudge them that ability. I celebrate that for them! But it can be incredibly frustrating to have late-diagnosed Secondary Progressive MS and know that the days of being able to live the life I had before are gone. Don’t get me wrong, I had an amazing life and I’m thankful I’ve had it — I’ve traveled the world, had a profession I loved and was good at, had the most wonderful fairy-tale 2nd marriage, was physically active (rock climbing, surfing, wind surfing, hiking, snowboarding and more).

    These days, I’m lucky to go outside the house. I can no longer drive because I can’t control my leg movements. I live with family because I can’t take care of myself any longer. I miss the old me. I miss being independent.

    Do I think about putting myself out there to maybe find a relationship? No. Not only do not not want to put someone through what comes with being with me, but one of the major sensory symptoms I have is close to zero sensation below the hips and almost no sex drive (a symptom rarely talked about).

  • Devin Garlit moderator author
    1 year ago

    Thank you so much for sharing marigoldg. I appreciate you sharing what can be difficult for so many to open up about. I am sure that many will read your story and think of themselves and realize that in some way, they aren’t alone.

  • HuskerHog
    1 year ago

    I worked multiple jobs at a time to keep my wife at home with the kids (her dream). Glad to do it. When diagnosed, we got her back into school knowing my working days were numbered. School then work. She hated her new life. She told me so. I worked hard trying to regain mobility and overcome, spending much time with a physical therapist – yes, a woman. Wife accused me of having an affair and divorced me after 25 years of marriage. There was no affair. It was an excuse to get rid of me, fearing a life of working and being a caregiver. After several years of depression and therapy, I am now engaged and have completed two triathlons. I am a better man than before in so many ways. She couldn’t wait for me. Her loss.

  • Devin Garlit moderator author
    1 year ago

    Thanks for sharing HuskerHog! Very much appreciated! As your story highlights, many times, situations like this can be a blessing in disguise!

  • Karen Mac
    1 year ago

    Thank you Devin for your honesty
    (from a person that usually pretends that all is well because the struggle makes people so uncomfortable, and I do believe only the strongest friendships as well as marriages can survive, sometimes only with professional help)

    I have been thinking about this often as I separated from my husband a year ago after 45 years of marriage!
    We married at eighteen, when it was unusual but certainly much more common than it is now! I was diagnosed in 1994, but have been doing fairly well until relatively recently (use a walker and scooter) and stopped driving about three years ago. (we lived in a rural area) My life really shrunk from that point on, and there are other factors, but my husband denies that MS has been a factor in our marital problems at all. I think admitting that yes, of course it is more than difficult most days is perfectly normal and healthy. Nobody can help if you never have a problem. (yes I did write those words, and am working on believing them myself)

    Anyway, thank you again for the post, and to everyone else that responded. It is so very good to read realistic takes on the life effects of living with a chronic disease.
    Oh, I could have written an uplifting article about my great marriage, or my warrior fight against MS when I had it about a minute,. .
    it did not ruin my life, and I thought it would, but it did get more difficult after twenty plus years no doubt.

  • Devin Garlit moderator author
    1 year ago

    Thanks so much Karen Mac! I very much appreciate you, and everyone, sharing. As you said, I try to be realistic about everything and just put it out there. There are plenty of other people doing uplifting stories. I personally just get more from hearing the real deal, hearing about folks who have similar issues as me. So I figure others might benefit from that too. I wish you luck. I stopped driving about three years ago too, about the time I moved to a more rural area from the city, so I understand how the effect that can have (and I’m working on a piece about that too).

  • FindingPeace
    1 year ago

    I agree with you – it’s important to have a rounded perspective of the good and bad of MS. So, I really appreciated reading your story! Thank you for sharing that.

    I’m relatively new to MS; I was only diagnosed 2.5 years ago. However, I think it has had the opposite effect on my confidence level. Through my diagnosis, I realized how I needed to respect myself more, be more responsible with my decisions, and surround myself with people who supported me. Unfortunately, it made me realize how if/when my disease gets worse, my husband wouldn’t be there for me based on what I’ve seen of our 10 years together. It’s been difficult realizing how our marriage was unhealthy for me, but I do think this new found strength and respect for myself will help me navigate the waters ahead.

    I wish you all the best in all that is to come!

  • Devin Garlit moderator author
    1 year ago

    Thanks so much FindingPeace! It’s sounds like your diagnosis may have been a blessing in disguise. Which, believe it or not, I think many people can say.

  • Judi B
    1 year ago

    Devin
    Thank you for your articale.

  • Devin Garlit moderator author
    1 year ago

    Thanks so much for reading Judi B!

  • patrice59
    1 year ago

    No matter how good you think your marriage or relationship is, you have to be prepared for it to possibly end. My husband of 34 years, who was initially supportive when I was diagnosed, said “I want my life back” while I was still mobile and required no care. I won’t go into the details, but I will offer advice that you can take or leave.

    – Try and work it out. If it is obvious that can’t happen, try to end things as civilly as possible, but protect yourself. The anger and destructiveness of the situation will take its toll on your already compromised health.
    – Know exactly what your financial assets are and where they are including your house, car or any other hard assets. Make a hard-copy printout and keep it in a secret, secure place. That way if your partner tries to abscond with all the money your attorney can help recover it. If you don’t have any records then it becomes harder and more expensive. You will need the money. Protect it.
    – Get your own lawyer. This was my big mistake as I somehow had the thought that, 1) using the same lawyer might help him see we should stay together–a stupid thought, and 2) your partner should agree to pay all costs. If he or she really wants out then they will agree, though they may not be happy. This isn’t about their happiness, it’s about you being safe and not being take advantage of financially.
    – Don’t be afraid to take your partner to court. If he or she is deserting you, the person with an incurable, progressive disease, then the court may be inclined to rule in your favor.
    – If you have a house or other hard assets, take half their value in cash. There is no guarantee that your ex will continue to make payments to you in the future without you having to go back to court. I know this may not be possible, but if it is then do it.
    – Make sure to have good, reliable friends and keep your family close. I do not know what I would have done without my family. They are my rock.
    – Do everything you can to keep yourself as physically and emotionally strong as possible. It’s the hardest thing to do and keep doing, but it is important.
    – If you suspect you could be abused then make an escape plan right away. My neurologist has a couple of patients who have been beaten by their spouses/partners. Make sure you know where the closest shelter is or have a family member or friend you can get to. Talk with them first so if you need physical help getting out they will be ready. Leave your stuff, except for financial and health records. Things can be replaced, but you cannot.

    I don’t mean to sound grim, and heaven knows I hope you never need this advice, but there are times we have to set aside our hopes and prepare for our future well-being without that person who said they would be there forever. It is just wrong, but you can spend your time with those thoughts once you are safe.

  • Devin Garlit moderator author
    1 year ago

    Thank you very much patrice59. This are some good tips. It can be important to see info like that laid out there.

  • Musicang
    1 year ago

    I wish I had had this advice prior to my divorce. My former marital associate had been verbally abusive for many years following my diagnosis and especially after I went on disability. We had 2 children together, and because of them I continued to try and make things work. I regret staying in things for so long, but I eventually felt trapped. He then took (and still tries to take) advantage of me throughout the divorce process. I had my own attorney, but it did not help that much for a variety of reasons.
    Fortunately, I have come out a better, stronger person in the end. My children are scarred, but they are getting help. In the past year I have gotten remarried to a wonderfully supportive man who understands my limitations as he has some of his own and has a parent that is disabled. I am confident he and I and our new combined family will pass each hurdle together.

  • wudalver
    1 year ago

    Ok stop the boat.I’m sorry it wasn’t a good experience for you but not everyone has it rough. I have ppms my husband walked out my i moved cross country he never offered any help so i have no compathion i have had to buck up i movedto Florida and i met a wonderful man.perfect for me he has been through so much with me. Let’s see a broken hip a total of 3 major surgies then i had a stomach bleed that was a total of 3 major surgeries as if that weren’t bad enough they had to shut down for the. Surgeries only to be on a ice diet i dropped down to a 85 pounds i made a comeback now I’m back to 115 pounds. Thank god. The secret is. To never give up my own mother,sisterand brother would never call me or get updates ok fine screw my family the one that has stuck by me is brad he has stuck by me through everything all the falls he never left me.so the moral. Is never give up that piece of heaven is there oh p.s. i have progressive m.s. and yes i can do so to all of you need a pick me up email me. Wudalver@gmail.com i will talk to you at any time hugs

  • LuvMyDog
    1 year ago

    Devin, you always write a good article, I enjoy reading your thoughts. As far as marriage goes, I’m not a fan. People are people. I don’t care who they are, friends, relatives, husbands, wives, partners….they are just mere humans…and human beings are subject to foibles, i.e., small (or large) weaknesses in character, nobody……is perfect. Everyone has a point where they question if what they are doing is what they really want to be doing or for how long they want to do it. I don’t care who you are. Some people, and very, very few in my opinion, are people who will hang in for the long haul. Those are dedicated, respectful and loyal people, too bad there aren’t more of those around, I sure don’t know anyone like that anymore. The last of my really good and old friends died several years ago now and there is not one single solitary person that I believe I could trust 100% or depend on 100%. Those, I’m sorry to say are the facts of life, ugly reality. So what do we do? We stop whining. We live for ourselves, and with me, my great little dog too. We do what we can. We get up and make every effort to survive because there is nobody on this planet who is responsible for our happiness or well-being……………………..except for ourselves. Divorce happens to many, many people both healthy and not so healthy. It’s not a unique situation and life does go on.

  • Devin Garlit moderator author
    1 year ago

    Thank you LuvMyDog! I always look forward to you comments!

  • Deanne
    1 year ago

    Thank you so much for writing this article. I have not known anyone else with MS personally. As sad as it is for relationships to be damaged by something that we can’t control, I also wonder how much of a role my MS played in my divorce. Thank you for being so candid and letting me know that I’m not alone. So many struggles come from our disease that people have no clue about and don’t know how to handle. It’s very difficult for loved ones to watch as we push on. Especially those who knew us before MS started to claim our bodies.
    I was married at 21, met my ex-husband in high school when I was 14 and had our daughter when I was 23. It was when she was about six months old that I started having symptoms. This was very hard for my ex-husband to deal with as he had known me when I was very active. We were married for 15 years but it wasn’t all happy. The last few years were very tumultuous and neither one of us new how to be a couple with this disease. We both did the best that we could to help each other but in the end it wasn’t enough. He is a wonderful man and a great father but I believe that MS was just too much change.
    I wish you the best in life and relationships. I agree that you first have to be happy with yourself before you can be happy with anyone else.

  • Devin Garlit moderator author
    1 year ago

    Thanks so much Deanne! I appreciate you sharing your story. We are definitely not alone. Which, while I hate to hear of others in this situation, it’s a little comforting to me know that it’s common. The stories that are so often shared are not the norm and don’t highlight the difficulties that so many of us encounter. So I’m very happy to see other share, what can be a very tough thing to think about. I know it helps me, and I hope others, feel a little less alone!

  • Deanne
    1 year ago

    *knew how to deal with. Dang talk to text.

  • 1mnccej
    1 year ago

    I have had MS for 32 years-20 that were easy with relapses that responded to treatment. The last 12 have definitely been a challenge as my mobility increasingly declined. I finally gave in and got a power WC last year which has opened up many things I had stopped being able to do. I got married at year 12 when visibly it was hard to even see I had MS unless I was having a relapse. At the start of our marriage, my husband was all ‘I don’t care if your disease worsens and you end up in a WC’. Year 26 he left me for another woman-found out later it was because she was pregnant. At that time he told me he could not handle my disease anymore…We were separated for 5 1/2 yrs before last summer he broke the news of his daughter to me and our then 17 year old son-year 31 of MS. Year 32 brought about divorce and a very real fear of how I will manage as I get older and may need more assistance (I’m now 53). My 18 year old has had to take on the role of man of the house plus help me up when I fall, provide an arm for me to grab when standing up, does most of the cooking and generally is my rock. I want him to have his own life but says he won’t leave me alone. I would love to here from others with MS that are alone and worry about the future-any resources, etc. I figure my chances of finding someone else to be with are probably slim to none.

  • Devin Garlit moderator author
    1 year ago

    Thank you so much for reading and sharing your experience 1mnccej. I’m always very appreciative of that, particularity when it’s a subject like this that can be difficult. I 100% have the same concerns you do. I thought for sure that I was set, that I had a partner for the rest of my life. Someone to help out with, someone to be there and be there for. Now I am about to turn 40, I’m on disability, and I know my body will only get worse. It’s very difficult to think about the future, but also difficult not to, if that makes any sense. MS turns people into survivors though, and I believe things will work out for us in the eventually (we have to be due, right?). I’m not sure how things will work out, but I just know they will. We certainly aren’t alone in this situation, I’d love to hear from others as well!

  • Julie
    1 year ago

    Thank you for your honesty. I was married for 25 years when I was diagnosed. I was overwhelmed with my feelings about living with the disease and how it was going to affect my family. My husband told me under no uncertain terms would he ever leave me.

    He supported me and went to all doctor appointments with me for 5 years then told me he couldn’t deal with my MS. Neither can I. Is there somewhere I can go to get away from it? My divorce was final the week before what would have been my 30th anniversary.

    So now I had not only my MS to handle, I had my ex and my broken hearted adult children to worry about. I got to where I resented reading stories about loving couples that supported each other. I wouldn’t read them. What had they done right that I didn’t?

    11 years later I have finally decided that there must have other underlying problems in my marriage. The diagnosis just pushed it over the line for him. When I wouldn’t file for divorce he told me I had to be the one that did it, there was no way he was going to court and have the judge think he was an asshole for divorcing a poor crippled woman. Guess what, I filed and everyone still thought he was an asshole.

    I’ve learned how to live alone now. I’ve also learned who my friends are and who I could count on when needed. It’s not so bad. Sure I still get lonely and wish I had someone that was there for me at all times but the thought of going thru that kind of pain again makes me rethink dating or being in a relationship.

    I hope all that have that special someone remember they really are special. I wish good health to all. Julie

  • Devin Garlit moderator author
    1 year ago

    Thank you so much for sharing that Julie. I know it isn’t easy. In many ways, I think people like are a little lucky. Our situations allow us to bring reality to the forefront much quicker than most. We know that the people that end up standing by us, that remain our friends, are truly some of the best. MS can do a good job of eliminating the fake people and the assholes from our lives. At the end of the day, it can be lonely, but I think we are better off. Judging from the response to this, I can say, we are certainly not alone when it comes to having this situation!

  • mario lobo
    1 year ago

    Devin,
    My perspective is that of a long term caregiver for my wife who has advanced MS. I’m moved by your article. The previous commenters have responded to the interpersonal/relationship aspect of what you wrote far more eloquently than I possibly could. But I wanted to let you know that another aspect of what you wrote really resonated with me. That was :
    “It’s uplifting. Until I see a great picture of them after finishing a 30 mile MS Bike race together. At that point, I realize, while they’ve no doubt had challenges, they’ve only experienced the tip of the iceberg …”
    That really hit a nerve with me. It caused me to recall the hundreds of articles I’ve read over the years during my wife’s long debilitating course of this disease, about folks with MS who win triathalons, head large corporations, write novels… you name it! And the theme is always the same : They don’t ‘let’ MS stop them from performing at a super high level. “LET” ??????
    Don’t the people who write such articles realize that folks with MS face real, varied and often major limitations, and there is no “letting” involved? Very aggravating!
    Thank you, Devin, for sharing this with us.
    Mario

  • Devin Garlit moderator author
    1 year ago

    Thanks so much Mario! I always feel like I run the risk of being considered negative when I point out such things. I don’t see it as negative, I see it as realistic. There is such an overwhelming number of overly positive stories and sayings out there, that it’s always felt false to me. Over my time with the disease, those things have made me feel alienated. The “let”/”doesn’t have me” is a a huge pet peeve of mine. The latter one I even talked about here: https://multiplesclerosis.net/living-with-ms/ms-ms-sort/
    thanks so much for reading and taking the time to comment, I very much appreciate it!

  • Marcie Kim
    1 year ago

    I am with you! These “inspirational stories” sting when you see the afflicted couple are either very newly diagnosed or among the minority of MS patients who have minimal symptoms. They rode together in a Bike MS event?!?
    More importantly, you’re a good guy. We can all tell from your words! The right woman is out there. Thank you for being candid about the struggles.

  • Devin Garlit moderator author
    1 year ago

    Thanks so much Kim! Appreciate you saying that and taking the time to comment!

  • feisty804
    1 year ago

    Reading this, I get what you’re saying. I said before that my marriage is stronger but I have felt so many of the things that you described.
    I know it’s awful for my husband to watch me decline so I do hide it often. I can’t when he’s carrying me to the bathroom after a seizure and icing my bruised head.
    I do get scared, and I was the primary breadwinner while he was an artist. He now works 50-60 hours a week as a plumber without complaint.
    He goes places; parties, dinners,etc without me more often than not….
    So I suppose it can happen to any of us.
    I’ll just keep being stubborn. 😉
    Thanks, Jen ♡

  • Meagan Heidelberg moderator
    1 year ago

    Thank you so much for sharing, feisty804! We appreciate you reading Devin’s article! We are so glad that you have such a great bond with your husband, and that your relationship is so strong!

    Meagan, MultipleSclerosis.net Team Member

  • tfs
    1 year ago

    Devin: you are a most remarkable person. You share your most intimate feelings and realities. I can barely bring myself to reply as courageously as you have done. This is a very lonely road to be certain. My partnership and marriage of 33 years has been through a great deal including infidelity – spiritual, financial, and emotional. Relationships are so very fragile and the isolating nature of the disease burdens it even further. Keep open. One Day at a Time. You have a great inner strength whether you know it or not. You reach others and the story is still unfolding. You are very worthy. Very. I wish you peace and hope you find strength in the knowledge that speaking your truth is healing to others and yourself.

  • Devin Garlit moderator author
    1 year ago

    Thank you so, so much tfs! I very much appreciate you saying that!

  • Meagan Heidelberg moderator
    1 year ago

    Hi tfs – I hope Devin will see your comment! I just wanted to reach out to thank you so much for sharing your journey with us and our community. Your advice is so perfect.
    Best – Meagan, MultipleSclerosis.net Team Member

  • Dimitri
    1 year ago

    Thanks for not sugar coating reality.
    I went through a similar break up, but it wasn’t a marriage it was an 8 year relationship; my first long term relationship. In retrospect I must have been unbearable. I had MS but wasn’t formally diagnosed yet. It was the chronic anxiety and depression that put stress on the relationship as well as outside interference from freinds. It’s good that y’all are still friends though. We are only on a superficial level, which I cannot do very well. I think you hit a nerve with this topic that the ms community doesn’t talk about.

  • Devin Garlit moderator author
    1 year ago

    Thank you Dimitri, appreciate that! And I do think I hit a bit of a nerve, a fear as well.

  • Monk
    1 year ago

    Oh Devin my heart is breaking as I read your article. I hope you are able to find some solace and support with in-person people and/or online people. And Ferdinand , too.

    Just to let you know your strong work ethic comes out loud and clear in your post. The consistency and the depth of your articles demonstrate this. Also you reply to many of our comments, sometimes in depth or a simple thank you. I’m very grateful because it feels like a two way street, as we read your post, you read our replies. It feels like you are respecting and listening to us. Very few post writers take the time to do that.

    Thanks for writing!

  • Devin Garlit moderator author
    1 year ago

    Thank you so much Monk! I appreciate it, I definitely took a couple days to step away after this posted. I do try to get to every comment too, if I miss one, it’s a mistake. I’m so honored that anyone would ever read anything I wrote, let alone comment on it. I’m not only as fast at it as I’d like, but I think if someone takes the time to comment on something I wrote, it’s my duty, to read and respond. It’s not even a duty, it’s an honor. I also like to look at what I write as just the start of a conversation for everyone to get involved in!

  • Marisafaye
    1 year ago

    Well… this broke me!! i do all the things that you did.. i get depressed, i say things i shouldn’t say.. and nor do i mean them! i cry because he wants to go do all these things and i feel like i can’t. i feel like i’m holding him back.. i see old pictures of him with friends and even ex’s and see how happy he was and how active he was.. and i cry!! Because i don’t feel like he is “that kind of happy with me” i feel like i’m a burden.. or a pain!! He tells me i’m not holding him back but what i see and what i hear are two different things.. I want to believe i make him SO happy.. but it’s hard!

  • Devin Garlit moderator author
    1 year ago

    Thanks for opening up and sharing Marisafaye. I completely understand. Old pictures can be dangerous. They typically only ever capture the best of times and you don’t see the worst. Just because you see a few moments of happiness in his past, doesn’t mean there weren’t problems too. It doesn’t mean that he’s still not happy with you. I think we can run into problems with trying to assume we understand how someone is feeling. I know that happened with me, it would get to get to me, and led me to push her away. Sometimes, we simply have to accept that people are happy when they say they are. Thanks so much again, I hope things go well for you!

  • Kelly McNamara moderator
    1 year ago

    Hi Marisafaye. Thank you so for sharing so honestly with the community. Relationships can be one of the most difficult aspects of living with MS. Know you’re definitely not alone in feeling this way. – Kelly, MultipleSclerosis.net Team Member

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