Husband always seeking pity
Hi all, just hoping for some feedback for a reoccurring theme of my marriage. Husband of 12 years diagnosed with RMS and hashimotos, rather stable with minimal progression but does suffer from chronic pain/fatigue. Dx the year before we married. I feel as though I am quite supportive... I am constantly researching Dx, making Dr appts, managing his health, looking for autoimmune modalities and diets, etc. I manage 85% of the housework, 2 children and work full-time. I should mention that he works 40hrs/week as an electrician and at least an extra 5hrs/week on side jobs...comes home has NOTHING to give to family and blames it on the MS.
I feel unsupported by husband who sleeps 2+ hours each afternoon when he gets home from work, he is emotionally disengaged, doesn't help with kids homework (they both have learning disabilities and struggle), he doesn't take me out or show me affection and will not make quality time for marriage. I will say, he has always been emotionally immature but for the last 13 years I feel like he uses his MS as an excuse for everything, I feel like within the first 10 mins of meeting someone new they have to know that he had MS, like let's just wear a name tage that says "hello my name is: I have MS"!
I feel like he is constantly seeking pity. He doesn't spend time with us, he cannot conversate with us, he's never intimate BECAUSE OF THE MS! I apologize and hope not to offend anyone but I feel like he uses his diagnosis as a get out of jail free card or hallpass for poor behavior and lack of accountability. He makes awful comments even in front of the children that the stress I cause by calling him out on poor behavior "is kryptonite to his MS and he should just kill himself".
It all about your outlook and not allowing illness to consume you and make you bitter. Feeling sorry for yourself after this long is ugly = (
Ughhh I cannot believe I am typing this and honestly I do not know what I am even asking for. God bless, you are all amazing.
This was a very difficult read (it should probably have a trigger warning) so I will do my best to be as kindhearted as possible. I'd say it sounds like some couples counseling might be in order (as well as separate counseling for each of you). Stable or not, listening to your husband's schedule is shocking. SO many people with MS end up in a situation where they can work and do nothing more (and he's doing extract work as well!). Many, after a time, end up not being able to work at all. If you've never felt the pain and complete exhaustion of MS fatigue, it's hard to understand. It sounds to me that he's doing the best he can. It also sounds like he has to mention the MS, not for sympathy, but as an explanation. It's not easy to be in that situation, so there is often a feeling of having to mention it simply because you feel you need to explain why you aren't doing as well as you'd like.
I've no doubt his illness is an inconvenience for you, and I've no doubt it is difficult for you, but your attitude towards it will only make it worse, for him and for you. Despite what you may think, you cannot will away the symptoms of MS, yes, you shouldn't dwell on them, but nothing you've mentioned here indicates he is dwelling on it, it all screams that he is doing his best with an unsupportive partner (real support is a lot more than managing, making appointments, and doing research but takes a certain amount of empathy). I hate to say it, but your attitude toward him is nothing short of appalling.
I wish you both the best and I hope that you can get the help you need. Allowing these thoughts to fester will only make things worse.Hi Devin, I greatly appreciate your response. I'm truly sorry for any offense I may have caused. This is exactly what I needed to hear and I appreciate you taking the time to do so. Sometimes I question if I am in the wrong and need a fresh perspective. Life is hard right now, but obviously much harder for him. I am trying to see the silver lining. How do I find fulfillment in this marriage. Or do I walk away for avoid any unnecessary stress to further harm him. Just putting my thoughts out there, obviously no-one can truly provide me with that answer. Again thank so much and sorry for any offense. You are appreciated
***As part of our Community Rules, we ask that everyone here remain respectful. We appreciate that everyone comes here with different viewpoints and that each person's experience with MS (or that of their family members and spouses) is unique.***
_______________________________________________________________________________My heart is going out to both you and your husband after reading your words. I'm sorry that it sounds like you are having difficulty getting both of your needs met and understanding one another. It sounds like there is a lot of hurt, sadness, resentment, and loneliness from both of you. I think much of what you said boils down to communication and listening to understand, not to respond. What I mean by that is that it sounds like you both are sharing your thoughts and feelings, but it's falling on deaf ears for both of you. Devin had a great point when he mentioned counseling as both couples and separately. It can be quite helpful to have someone uninvolved moderate the conversations that you guys need to have to help re-establish your bond, your understanding of one another, and, most importantly, your kindness and grace toward each other. Only you know what the ins and outs of your marriage and day-to-day look like, but it sounds like you came here looking for a different perspective, which to me, seems like you'd be open to doing the work it takes to make your relationship stronger. Counseling is a great first step. The National MS Society has a really great doctor locator section that you can filter to find therapists in your area - many that have experience with couples and chronic illness. https://www.nationalmssociety.org/Resources-Support/Find-Doctors-Resources
I would also strongly urge you to spend some time in our forums here and on our Facebook page. Read our articles written by those living with MS. Look through the comments sections. Hear what people living with MS have to say about what it's really like. Utilize our search feature to look up things your husband has mentioned or that you've noticed. Does he need to sleep after work? Try searching "fatigue" or "mental exhaustion." You mentioned being upset that he shares he has MS immediately in social settings. Try searching "telling people about MS" or "being social" to understand why someone with MS might do something like that. Educate yourself on the things that maybe he can't convey at this time.
Again, not discrediting your needs at all because they are completely valid and you are deserving to have your needs met as well. MS can just be really freaking hard. So much harder than anyone living without it can possibly imagine. It affects people in profound ways, both physically and mentally... sometimes in ways that are so big that it’s almost indescribable. It affects people’s perspective of their own personal expectations for themselves and for the people around them.
Again, my heart is going out to you because it sounds like you both are reaching a fork in the road and are going through a hard time. Please know that you and your husband have the support of this community. Thank you for your vulnerability in sharing here and we hope that the responses help give you some insight. 🧡 Kayleigh, MultipleSclerosis.net team
Hi
. I won't repeat what others have already written. I do think it is very brave of you to come here and be so honest about how you feel. I are glad you found this community and I hope we can help. If you are in a place now where you can understand how overwhelmingly exhausting and painful MS can be on a daily basis, or if counseling gets you there, maybe it is time to consider ways your husband can back off on his work schedule so that he has more time and energy for the family. This might not be something he can do immediately, but maybe you can come up with a plan together to pull back in phases. Unfortunately, MS will never go away. If you are not already the major breadwinner, you might have to be in the future. You have to ask yourself whether you can make peace with that and maybe even embrace it. MS will always be a major influence on your life together, but many, many families live life fully despite it. Successful families treat MS as something they have to work with and around together, but they don't let MS define their relationships and they don't let resentment build up to destructive levels. They understand that MS is no one's fault. If you leave your husband, know that is something you are doing to help yourself, not him. It's okay, if that is what you have to do. No judgement here. Only you know whether you love him enough to remain committed despite the challenges and to do so in a positive way, but be honest with him and be honest with yourself. He doesn't deserve to be treated as a burden and that is what will happen if you don't through these issues. My heart goes out to you both. Rarely to people think about challenges like this when they take the vows of marriage. It is unexpected and lifechanging. I hope you can find a counselor who has experience with chronic illness and can help you both work through this to make decisions and changes that are healthiest for your both. Sending lots of love and hugs your way. - Lori (Team Member) I am not sure what this post will appear it, but it is meant as a postscript to my response. Here is an article that might help you understand how backing off on his work schedule might make a difference for your family: https://multiplesclerosis.net/living-with-ms/energy-management. I hope this helps. - Lori (Team Member)
Hi narmstrong452. I know exactly how you feel and that is coming from someone diagnosed with MS. But I'm turning the tables around on my husband who I feel that doesn't understand how I feel most days. Yes I've decrease my nursing work hours but I'm still fatigued on my days off. I nap most days in the afternoon, but just sitting on the couch watching TV can get you a dirty look. Am lucky that my children are grown up and have moved out of home, but for me some days can be a struggle and I feel my husband doesn't understand that or what I'm going through. It's not hard to ask if I'm feeling ok today or do your own research on MS to find out what we are all struggling with day to day. This is never going away....
I wish you had more support from your husband,
. You need and deserve that. Do you think he would read any of these articles if you shared them with him? Please know we are here for you whenever you need us. Gentle hugs. - Lori (Team Member)
Dear narmstrong452,
as a member here, I personally take no offense and am so happy that you were honest with things as you see them. It took a lot of courage for you to go ahead and bare your thoughts and feelings and reach out in hope of support and maybe even a solution to what you're experiencing right now.
Please don't walk away from him, he needs you just as you need him. Don't ever give up looking for help until you find someone you're both comfortable with.
I will give you my thoughts (for what they're worth) on why maybe he mentions having ms shortly after meeting people. That's something that resonates with me because I feel that "they" are going to notice the imbalance, unusual gait, etc. that I have anyway, so I bring it out in the open because it makes ME feel better. Of course it depends greatly on the situation, etc.
I too am in awe that he is able to work as you've explained he does. I used to be able to work all the time, walk 5 miles on occasion, and do everything else that needed to be done. (We never had any kids though.) Now, I have NO job. I just try to do things around the house as I can. My brain tells me to do this or do that however my body has very different ideas and many times won't allow it.
There are so many variables to this thing called ms, and one of them is relationships. It sounds (to me anyway) like your husband in his own way, may not be seeking your pity but your strength. MS can make you doubt yourself and your capabilities in so many ways.
It sounds like you are both exhausted right now. Please know I am keeping you both in my heart. 💖
