Navigating Relationships with MS

Navigating Relationships with MS

Jennifer Silver Linings

Relationships are work. When you add in a chronic, progressive disease, the work becomes exponential. This is not to say work is a bad thing, as we reap immense rewards when we put effort into anything. Rather, anything worth doing is worth doing well.

Being in a relationship with someone with MS takes education, communication, commitment, and support. Diagnosed after being married 14 years, the constant capitulation and progressive nature of my disease put a strain on both of us. Overnight, we took on roles we never asked for or wanted; my husband the caregiver and me, sick. While our roles expanded, we worked, and continue to work, very hard to keep our identities solidly ourselves as man and wife. We easily collapse into default identities. There are times the progressive nature of MS commands this, but it is integral to the success of the relationship to find the way to back to you.

Education is paramount, as knowledge allows for understanding and forgiveness. There are facets of MS that are difficult to cope with and having an audience while enduring them can be challenging. The frustration of daily struggles is our own, yet it is easy to take it out on those closest to us. It is vital to be cognizant and responsible for our behaviors, take ownership of them, and apologize for them when necessary. Couples who are aware of potential hurdles generally have an easier time navigating these murky waters. When we know better, we do better.

Often, a couple finds themselves in a cyclical rut — different disagreements but similar dynamics. Rest assured, this is normal, as the chronic nature of MS presents unique challenges to even the strongest unions. While there are myriad support groups for those living with MS, couples counseling can be very effective at breaking debilitating cycles often cultivated by unrequited fears and resentment.

Before you can effectively work on anything, it is essential for both parties to want the relationship to work. While those in long-term relationships or marriage may want to strengthen, things may be different for those just getting to know one another. I cannot speak to dating with MS, but I know it is an easy scare as most equate MS with a wheelchair out of sheer ignorance. Information can empower, but inundating someone unready or unwilling can be daunting, so take things at a reasonable pace while not hiding your disease.

MS can be all-encompassing; I liken this to a third party in the relationship as it takes a great deal of attention away from the two involved. Some will grow to resent the time and energy necessary to maintain and treat this disease. Therefore, communication is essential. Talk with one another and check in to gauge the temperature of things before they get crazy and develop tools on which to rely when they inevitably do. The potential progression and severity of each disease differ, but you can count on unpredictability, the strongest couples are those who learn to swerve.

I have found it incredibly helpful to live a full life autonomous from my disease as this life force is contagious. We are not MS. MS is but a facet of an otherwise beautiful life and the same is of your relationship. MS is not what brought you together, and it is so helpful to remember why you originally fell in love. Take full advantage of your good days to highlight those things you love in one another, and on the not-so-good days, cozy up and watch your favorite shows.

Managing your relationship does not sound sexy, but sexy is an ever-morphing adjective. At nearly 49 years old and eight years into living with MS, kindness and empathy are far more alluring than any gift or event. I have worked hard at finding contentedness with both another and myself and that work has paid off. I have diamonds, but last I looked, they cannot make me dinner when I am not feeling well, cheer me up with a funny joke, or provide that familiar hand to hold when it all seems to come apart.

However, trust me — when they can, I will let you know.

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Jennifer Powell is a health writer and weekly columnist on Multiple Sclerosis. Jennifer imparts her hopeful optimism into real-life challenges facing the MS community. Prior to writing her column, Jennifer freelanced for several online periodicals including WebMD. When not writing, Jennifer enjoys volunteering with animal rescue, traveling and spending time with her Golden Retriever.
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Jennifer Powell is a health writer and weekly columnist on Multiple Sclerosis. Jennifer imparts her hopeful optimism into real-life challenges facing the MS community. Prior to writing her column, Jennifer freelanced for several online periodicals including WebMD. When not writing, Jennifer enjoys volunteering with animal rescue, traveling and spending time with her Golden Retriever.

7 comments

  1. FB says:

    While not intending to diminish the issues that those with MS who are in a relationship face and need to deal with, trying to cope with MS when you are single and have a significant level of disability is even harder. Yes it is true that there are “facets of MS that are difficult to cope with and having an audience while enduring them can be challenging”, which brings to mind problems such as incontinence – who needs a witness to the “ooops, I wet my pants because my legs that don’t works so well any more couldn’t get me to the toilet in time”. However, travelling the MS path solo is pretty damn hard, especially if you have no family or support network around and that this has come about through no fault of your own – remember that many people can’t cope when others have a chronic progressive and disabling condition so they just fade away into the background and minimise their contact with you. So, to those of you have a significant other, appreciate them, because while what you have may not be perfect or without challenges, at least they are there.

    • Jenn Powell says:

      You are right, it is difficult coping with everything that accompanies this disease by oneself. I am so sorry you face so much of this alone.

      I stated in my article that I cannot speak to dating with MS as I was married already, nor can I speak to being single with it. That has to be extremely trying at times.

      Because I’ve lived with a chronic health issue requiring multiple (18) surgeries since 17, I empathize with some of what you speak of. Friends faded while i was young and there was difficulty meeting people & maintaining relationships. It was a female issue which made the humility factor intensified. It took the right man and for that I am admittedly blessed and continually grateful.

      I hope your words remind those in relationships or with friends and family who care to be mindful of their fortune.

      Thank you for taking the time to read my article.

      Jenn

    • mydigitaldiva says:

      I also am facing my declining health from MS without a significant other. I agree with FB’s sentiments and then some. I honestly feel there are far fewer emotional development resources for those of us who only have our friends, siblings, and our parents (if we’re lucky) to look to for support.

      I feel like I’ve become a burden to everyone in my life. I’ve never felt more unattractive and undesirable, so returning to my old life of carefree dating and enjoying meeting new potential partners is a non-starter. “Hey there, handsome. I’d flirt but right now I’m trying to figure out how to explain my 20 minute trip to the bathroom. Never mind these walking sticks!”

      If I wasn’t in such a sad funk over my latest exacerbation, I’d be trying to focus on writing about finding support when it’s not conveniently there to help with the myriad of menial tasks I’m regularly unable to perform myself.

  2. Jenn Powell says:

    First let me thank you for reading my article and taking the time to respond.

    I am really hearing the need for support aimed at those enduring MS solo. I want you to know that although I am not in your shoes my heart is with you.

    You made me laugh with your ‘hey handsome..20 min bathroom’. Before I was dx with MS or married, had18 surgeries for endometriosis, a radical hysterectomy at 26 and further bowel obstruction surgeries. I had similar feelings of feeling undesirable and unattractive and it was hard to date as my bladder & bowel freaked out on a moments notice and my female area was closed. Like noway.

    I know I can’t relate entirely to what you going through but I’m here to offer support and encouragement. I do hope you begin writing as you have so much to share.

    Jenn

  3. Bonnie Whalen says:

    I have been married 52 years and diagnosed 35 years ago. I was diagnosed when paralyzed on my left side. This fixed its self. There was no medication available for about 15 years. I have taken many different medications since they have become available.
    I now walk with a walker.
    My husband helps me through all the ups and downs of this disease.
    I try to keep positive. Rest when I need to and exercise when I am able to.
    I partake in a balance class once a week.
    Being with others has helped me through this difficult disease that you never know what tomorrow will bring.

    • Jenn Powell says:

      Thank you for sharing your experience and all you’ve endured with your husband.

      I certainly agree that being among others is not only helpful but imperative. Bravo to to you for working on your balance as fall prevention is key!

      Jenn

  4. Anon says:

    I in no way want to diminish how hard it is to those living with MS. However I am the caregiver in the relationship and it is also incredibly hard. I have yet to find any support groups for those who are the caregiver. And it’s lonely. I appreciate this article and love it. It’s hard and life changing on both sides.

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