This is a guest post from Helena Madsen of Chronic Marriage (www.chronicmarriage.com), a website dedicated to helping couples with chronic illness build extraordinary marriages. I have followed her postings for about a year now and found them to be inspiring and practical. The original posting was titled, Stepping into My Husband’s Shoes.
Have you ever imagined what it would be like to step into your spouse’s shoes and view your marriage from his or her perspective?
I’ve often wondered just how patient and understanding I’d be if I were the healthy spouse and my husband lived with muscular dystrophy.
This week I bravely decided to interview Jeff to hear his take on what it’s been like being married to me for the last ten years. I also wanted to give him the opportunity to speak from the caregiver’s perspective on what works and what doesn’t work so well in a chronic marriage.
When we first met and I told you I had muscular dystrophy, what were your initial thoughts?
I was certainly familiar with the term muscular dystrophy but I didn’t understand what it meant to be honest. Because I was attracted to you, I had a curiosity to find out more. The disease definitely didn’t diminish my interest in you. I remember thinking that whatever this disease is, I’m not afraid of it. The way I’m going to tackle it is to find out more about it.
Once we married, what surprised you or caught you off guard about living with someone with chronic illness?
Well, early on in our marriage, your symptoms weren’t real obvious but after a couple of years, I started to see limitations e.g. you couldn’t run, climb stairs well, etc. We had to start monitoring what we did physically. As the disease has progressed, we’ve had to change the way we approach things. In some ways, it’s actually been a blessing. I’ve always been someone who rushes through life, always on the go, and moving on to the next thing quickly. Muscular dystrophy has made me slow down in a good way.
One of the things I’ve learned about the disease is that we have to be very intentional about the choices we make. For example, if we’re going out, I always call ahead to make sure the building is accessible and easy for you to get in and out of. I don’t want our experiences to be diminished because of accessibility issues. I’ve also signed up to the fact that we can’t be everything to everyone. We can’t live the jet set life and that’s fine with me because I like the simplicity and groundedness that a slower pace brings to our lives.
What have been the biggest challenges for you?
The biggest challenge for me has been seeing your disease progress and trying to stay one step ahead of it. For example, two years ago, I saw a clear need for you to start using a power wheelchair in order to increase your mobility. You and I didn’t see eye to eye on that and it was a struggle for me. I wasn’t necessarily factoring in your feelings or what kind of emotional decision it might have been for you at the time. For me, it was more of an objective decision about what was best for you. My attitude was if it will ensure your safety then why not do it? I know that caused some friction between us.
In your opinion, what has helped us weather some of the storms and challenges?
I think communication has been the biggest thing. I think we’re open and honest about what’s working and what’s not. I think you set good boundaries with me. I tend to be a very social person and I like to include you in a lot of activities. When you laid down a boundary at first, I viewed it as a threat. For example, if we were going out with friends and you didn’t want to go because you were tired or worried about accessibility issues, it was hard for me to understand. But now that we’ve opened up the communication channels and are honest with each other, I realize it’s not a personal rejection. I think giving each other permission to do things independently of each other is also helpful.
What advice would you give to a caretaker spouse like yourself?
First and foremost is to keep the lines of communication open. For the caregiver, it’s just as important for you to express what you’re feeling. Just because you’re the caregiver doesn’t mean you have to stuff your feelings deep down inside and not share them. You shouldn’t view them as unimportant or that you’d be burdening your spouse. You’re not being selfish if you share what’s bothering you.
The second thing is that as a caregiver, you’ve also got to take care of yourself. If you’re not in a place where you’re caring for yourself physically, emotionally or spiritually, you’re not going to be very good at caring for your spouse in any capacity. You can’t be there 24/7 and that doesn’t mean you’re bad, weak or a failure in any way. You just need to be honest with your spouse about your physical and emotional capacity.
And maybe a third point would be to seek out a community of people to provide physical, emotional or spiritual support for you as the caregiver so that you can remain healthy.
What advice would you give to a chronically ill person regarding their healthy spouse?
The big one would be to extend empathy which is not always easy. Empathy understandably ebbs and flows depending on the day and/or situation. The tendency is to focus on you, the ill spouse because you’re the one struggling with pain and limitations. You need to feel loved and cared for by your spouse as well as assured that you won’t be abandoned because of your illness.
At the same time, it’s important for you to put yourself in the caregiver’s shoes. The caregiver’s life has been turned upside down too. The world as they knew it has changed and it’s going to take weeks, months and most likely years to get a handle on it. My advice would be to show a great deal of empathy for your spouse and try to understand how your illness is impacting them as well. Affirm them, thank them and let them know you appreciate what they’re doing for you. Tell them if a specific act of service makes you feel well loved and express your gratitude. Lastly, give them permission to take care of themselves too.
Thank you Jeff for being open and transparent and for offering wisdom to other chronic couples like ourselves!
Are there questions you’d like to ask your spouse but are afraid to? What might some of those questions be? Please leave a comment!
For help in talking with your spouse about all kinds of health related issues, check out Helena’s new ebook “For Better or Worse: A Guide to Talking About Illness in Your Marriage”.