A Love Triangle: Him, Her and MS

Building a successful relationship is hard work. Throw MS into the equation, and it can be even more challenging.

We talked to Kate and Frank, married for over 10 years, to discuss how MS affects their relationship and family life.

How has MS changed you as a person?
 
Kate: As a carepartner, MS has made me more aware that every day is unique, and one bad day does not mean that another will follow. I can say this now, a few years into our new life as an MS family. But when we had a baby and a toddler while learning how to maneuver through a diagnosis, I felt like one bad day would last forever. I try a little harder now to not dwell on one bad day, or even one bad morning. It’s also made me “try” to take better care of myself and recognize when I need a break. We’ve often prioritized Frank’s rest, and that meant that I would shoulder most of the responsibilities of our family and home. It’s taken a few years for all of us to realize that no one person can do everything and that I can only help others if I help myself sometimes first.
 
Frank: MS has changed me in almost every way a person can change. It has given me a new approach to life and made me recognize and value the “good times” more than I ever have because there have been plenty of more challenging times. It has also changed me physically since I’ve been exercising more than I ever have.

How has MS changed your marriage?
 
Kate: We just celebrated our ten-year wedding anniversary last summer. I don’t think I fully appreciated this milestone until it came. After Frank and I began writing blogs for the National MS Society, we started to hear from people whose marriages were impacted, both positively and negatively, by MS. It was comforting, sobering and heartbreaking to hear people share stories of marriages tested by MS, but like most things in our life, I didn’t dwell on the idea that MS can and does make marriage harder for some people, and that we are sometimes counted in that number. For us, MS means that we have to spend weekends apart because I’m taking the boys on a trip so Frank can rest, and that’s not always easy when our time together is already limited because of our schedules. While MS has certainly made our marriage more difficult in some ways, it’s made us stronger in our commitment to each other. By continually facing obstacles together for so many years, we know we can handle almost anything. We truly live our vows and make sure that we communicate as best we can, especially to tell the other when we’re feeling run down by the reality of fighting MS daily. 

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Frank: I consider us to be lucky in that I don’t think it has fundamentally changed our marriage despite the fact that it easily could have broken it down. We had a great foundation of a loving and caring relationship for over a decade prior to my diagnosis which has helped carry us through difficult times.

What are your tips for managing MS as a family?
 
Kate: We’ve only just started to find our successes as managing MS as a family, so my first tip is to be patient.  There were plenty of times early in Frank’s diagnosis that I thought that there would be no way that our family would live a normal life.  As time passed, I learned to embrace the notion that there is no “normal” by which we had to measure our life and that we create systems that work best for us. Second, MS can and will impact everyone differently, but EVERYONE is impacted. While Frank is the one experiencing the most change and dealing with symptoms, treatments and flare ups, our whole family has been impacted and changed. Our two young boys were just babies (4 years old and 1 year old) when Frank was diagnosed, so they don’t know much about life before MS. But now that they are growing, they see when Frank is tired, at the doctor, participating in an MS fundraising event, and they can react to all of these in any number of ways (as kids do). I try to keep in mind that they, like most adults, are sometimes confused by what having MS means, and I try to support them if I can tell that they are struggling.
 
Frank: Be selfish and squad up! While family is always important, the immediate family unit becomes that much more important after a diagnosis. In our case, the two of us, our two boys and our dog are by far the most important thing. Take care of each other, learn how to say no to things and focus on that family unit. At the end of the day, that’s who lives through the daily struggle so that is who you need to focus on.

What’s been the biggest challenge MS has created?
 
Kate: For me, the biggest challenge has been trying to keep Frank’s MS from impacting our boys too much. As parents, we always want to protect and support our kids and that’s even harder when one parent has an energy draining illness like MS. MS is unpredictable, and kids thrive on routines and predictability, so we’ve had some hard times because of that. Our boys don’t understand why Frank can one day play a full nine inning backyard baseball game and the next day be in bed all morning. We’ve tried to talk to them as much as is appropriate about the reality of having a chronically ill parent, and it sometimes resonates and sometimes doesn’t.

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Frank: Not knowing how I’m going to feel when I open my eyes every morning. Sometimes it’s accompanied with a headache and it’s always accompanied with numbness in my left leg. I have also experience more issues with depression than I have ever experienced before. Dealing with all of this while working full time, being a dad to two young children and trying to be the best spouse that I can is often times overwhelming.
 
Kate, what do you wish other people knew about being a carepartner?
 
Kate: Something I wish I knew when we first started dealing with the diagnosis was that it is, in fact, going to sometimes be hard to be a carepartner, and that its okay to feel overwhelmed, scared, frustrated and lonely. When Frank was first diagnosed, all of our energy was put towards his recovery and treatment plan, and a lot of the responsibility for supporting him, our family and our home fell to me. From being the person to help his administer his steroids at home, to being responsible for our two boys when Frank wasn’t feeling up to being around, I sometimes felt like I was supposed to do it all and be it all. Over time, and through communication with each other and people in our network, I’ve tried to avoid burnout as much as possible.
 
Frank, what advice would you give to carepartners about how to support their spouses?

Frank: Try to be as understanding as possible. MS changes everything about you and part of the struggle is finding out who you are after your diagnosis. An understanding carepartner goes a long way in helping work through that time. While we are sick, don’t treat us as if we can’t do anything. Not bring able to do things for my family is difficult but when I see my wife doing too much because she thinks I need the rest makes me feel even worse.

Know that we’re doing the best we can. Unfortunately, there are many days when our “best” is downright bad.

What advice would you give to other couples dealing with an MS diagnosis?
 
Kate: When Frank was first diagnosed, I remember making an effort to educate myself on the basics of the disease as much as possible. Just knowing the terms helped me feel more armed to understand the impact that was coming. For example, knowing that sometimes MS causes cognitive difficulties helped when I noticed Frank struggle with some thoughts or words during a flare up. Just knowing what to expect helped me as a carepartner and I, in turn, was able to tell him what I learned.
 
Even more important than learning about the disease is being an advocate for your partner and their role in dealing with the disease. Over time, Frank and I have landed on the same page of the script – we tell others what we need, not just what Frank needs. So, if that means that we can’t go to a night out with friends or family because I’m feeling particularly drained from caretaking, he’ll help convey that message so that people know that it’s not just about his health, but about mine as well. Likewise, if he’s having a hard time, I’ll be the one to help others understand how they can help not only him, but our whole family. I know that MS impacts families and couples differently, but this team approach has helped us not only keep communicating our needs with each other, but with the people in our lives who really don’t know what it’s like for us each day.
 
Frank: Be there for each other as much as you can. As the “sick one” it’s still very important for me to be there for my wife and make sure she gets breaks and time for herself. She gives me so much time that it’s important that she get taken care of as well.
 

Editor's note: read more about Frank's story here; read more about Kate's story here.
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    12 Comments

  • Vickie   Feb 20, 2020 10:30 AM
    Great article. It helped me understand just how my parents felt going through this journey of MS ( Mom ). Unfortunately, my father put 100% into taking care of my Mom and put his needs, wants, and physical challenges on the back burner...but they came from an era with that way of thinking. My Dad is considered my hero - he took care of her for 40+ years and gave her the best life a MS patient could ask for.
  • Melba   Feb 20, 2020 11:12 AM
    Thank you for your honesty! Being the caretaker is, at times, an overwhelming role. Sometimes the what if’s try to overtake my emotions. I focus on what we do have, which are many blessings in life, and I am very grateful for the life together we do have. It all takes great effort, daily prayer and God’s strength to get through each day. Our motto is “it could always be worse” and that keeps us from any pity party that may want to creep in.
  • John   Feb 20, 2020 11:19 AM
    Thank you for sharing your experience. My mother had MS that progressed steadily over the 40-year period from her mid-20s, shortly after my younger brother's birth, to her mid-60s, when she died about 30 years younger than her own mother and grandmothers had. Her illness was probably a factor in my parents' divorce after 27 years of marriage, and having a somewhat unsympathetic Christian Scientist mother-in-law telling her, "Mary, you know, you don't have to be sick," might have been the strongest negative influence. Fortunately, her own mother, a registered nurse, was far more understanding, sympathetic, and supportive regarding her medical condition, as was her father. who had always doted on his only child, who had grown up during the difficult Great Depression (both of my parents were born in 1929) and World War II era.

    We also have a valued friend, who was our younger son's favorite elementary school teacher and the mother of one of our elder son's classmates, with a steadily worsening case of MS. She remains very upbeat and popular, with strong support from her now-grown daughter and the rest of the community.

    Medical research is important. A positive attitude is important. Support of friends and family is vital.
  • CJ Strampe   Feb 20, 2020 11:38 AM
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  • SG   Feb 20, 2020 11:56 AM
    I was diagnosed in 2016. I work more than a full time job but can say when it comes to home life and exhaustion, my spouse has no clue. It’s a competition with him because he always points out he does more at home. For most of our marriage I did it all-work /kids/groceries/cleaning with little help...now that I get so tired-it’s harder to keep up. The lack of understanding makes it more difficult.
  • axonsatx  Feb 20, 2020 12:20 PM
    Just like you, Frank, my father was diagnosed when I was 4 and my sister was 1. My parents chose not to tell us until we were adults. I knew something was wrong and was always confused/frightened about his symptoms or our weird family diets. There was great tension and distrust in the family. And by the time they told me, I had MS myself, which might have been caught sooner if I had been able to give an accurate family history to my doctors. I applaud you for your clear communication and support of each other and kids. My fiancée (also named Kate) knew I had MS from the start, and was ready for it. She’s a miracle. -Tessa
  • Karen Harp   Feb 20, 2020 3:18 PM
    Thank you so much this article my husband and I are going through this now along with our son. I was diagnosed with MS is 2009 and now I’m 100% disabled and my husband has to do everything this will help us to communicate better and start working together thanks so much 🙏✝️
  • Johnny Chapman   Feb 20, 2020 4:33 PM
    My wife was diagnosed with MS before we married in 2005. Even before we started dating. I have never considered any condition different than my own as more of a challenge than the so-called "normal." We are all different. Perhaps this is why I have never really felt that our lives are any different than what challenges any couple might face. The key is to face whatever it is, together. My wife accepts me for who I am, and I accept her. We don't let anything stop us from what we want to do. Sure... MS has altered the course of our lives, but everyone has a different journey and path based on their specific lives. My wife runs an MS Support Group, and I started up one for Caregivers. We share our life challenges and how we deal with them, and hope that by bringing others, like us, together, we can all help each other.
  • John   Feb 20, 2020 6:02 PM
    I’m not going to surprise anyone when I say 😐. The rosy depiction of the crap MS throw into a marriage doesn’t do anyone any favors.

    I was diagnosed in 2011. Since then I describe the disease as knocking a ladder step of life out from under you. Just as you, your care partner, and your kids become accustomed to the ability MS has robbed you of, bam, the next ability is wiped away.

    Sure everyone is understanding and help as best they can, but your care partner stops thinking of you as anything but a patient and keeping a full time day job along with taking care of me full time at night is enough to make anyone puke. This disease robs not only the sufferer of an enjoyable life but it also steals it from those closest to the one with it. Saying anything else is a lie.
  • Janelle Lutz   Feb 23, 2020 8:38 AM
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  • Lori   Feb 23, 2020 9:59 PM
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  • John White   Feb 24, 2020 1:29 PM
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