In Sickness & In Health: Chronic Illness and Keeping an Open Heart

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My husband and I have been together for almost 11 years. For the last 7 of them chronic illness has affected our relationship, but it hasn’t changed our love.

In a partnership like marriage, when one person lives with chronic illness, both people end up hurting, even if it’s in different ways. When I first became severely ill, I was unable to look beyond my own suffering to recognize that it wasn’t mine alone.

True, I was the one feeling the physical pain, but suffering is different from pain. Suffering has a mental quality to it, and includes the emotional states of fear, grief, anger, disappointment, guilt, frustration, hopelessness and so on.

One thing I’ve learned about suffering is that trying to compare it only creates more of it. My suffering may be different from my husband’s, but that doesn’t mean he isn’t suffering too. The truth is that no matter who has the physical symptoms, when a pervasive illness enters a relationship both partners are affected.

To see someone you love hurt is to suffer. To have to put your dreams on hold because managing chronic illness makes heavy demands on your time and resources is to suffer. To live with the daily uncertainty caused by unstable health is a form of suffering too. And whenever needs for intimacy, be it physical or emotional, go unmet suffering is inevitable.

Understanding that chronic illness takes its toll on both of us helps me to broaden my awareness. It allows for big picture thinking as apposed to the small, self-focused view that’s often my default. Widening my thoughts to include the feelings of my husband is an act of compassion, which helps to relieve suffering. Both mine and his.

If I’m experiencing suffering I can disrupt the negative thought patterns that cause mental anguish by thinking of others.

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Whenever I engage in compassionate thinking I undertake the practice opening my heart. This is important because chronic illness, and especially chronic pain, has a tendency to cause my heart to close. It seems to be instinctual, something that occurs spontaneously in an attempt to protect myself from hurt. Finding the resources to maintain an open heart, or coax it to re-open once it’s shut, can be very challenging. And not just for me.

Its this closing of the heart that presents one of the greatest obstacles to staying connected and maintaining intimacy while navigating chronic illness. Yet despite these challenges, it is possible to nurture a healing love that lasts. A love that can withstand intense stressors to triumphantly rebound stronger than before. Here are some of the practices I use to keep my heart open when the symptoms and stress of illness threaten to close it:

Remember That You Love Your Partner.

Sometimes the truth of my love for my husband can be obscured by the physical and emotional wariness of long-term illness. When I recall happy memories of our love it can shift my focus from our current challenges. Love is a powerful force. Simply reaffirming that we do love each other can create more space for that love to flourish.

Action: Think back on a time when you felt happy and openly loving with your partner. Even if it’s been a while, that’s okay. What’s important is to revisit that happy memory vividly. Doing so stimulates and strengthens the part of the brain that experiences feelings of love.

If I’m struggling to recapture that feeling of care-free love, I’ll look through old photos. Pretty soon seeing our smiling faces will get me smiling again. I’ve even put together a special album for when I need that cheering up!

Words: “I know I love my partner. Things are really hard right now, but I know that I do love him/her.”

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A small photo album with happy pictures of the Hubs and I reminds me that although we have challenges we also have a lot love.

Bring to Mind All The Ways That Your Partner Expresses Love For You.

When my heart has closed it’s much more difficult for me to receive love, or even recognize that it’s being offered. For example, sometimes when I hear “I love you” but pain is present, the words don’t fully sink in.

Creating a list of all the little things my husband has done for me recently clarifies that I am indeed loved. When I begin to write out examples of love expressed, I open myself up to receiving that love more fully. As a result, I am often moved to reciprocate the love I feel.

Action: Make a list of all the ways in which your partner shows love or support for you. Think back over the last few days and try to recall all the times they spoke kind words, helped out with your care, or were physically affectionate etc.

Sometimes we overlook these small acts of love. Recognizing the ways that our partners reach out to us can open our hearts to them and inspire feeling of love, gratitude, and forgiveness.

Words: “I know my partner loves me. Despite these current challenges I know I am loved by my partner.”

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Writing things out often helps me to see them more clearly. In this case it show me how much Wonderhubs does each day because he cares.

Acknowledge That Your Heart Has Closed.

The foundation of any healthy relationship is good communication. When I realize that my heart has shut, I can let my husband know. That way he’ll have greater clarity about where I’m at and why it may be harder for me to give and receive love.

Action: Tell your partner, using whatever words feel natural, that your heart feels closed. Additionally, reaffirm that you still love them. Usually when I express this to my husband he responds by wishing me peace and we both soften.

Words: “Even though my heart is closed I love and accept myself fully.”

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When I admit that my capacity for whole-hearted love is compromised, I speak to my experience in an honest and direct way. Doing so creates an environment of vulnerability that encourages connection.

Practice Self Kindness.

Our ability to be kind and compassionate with others stems from our ability to be kind and compassionate with ourselves. If you’re hurting, be gentle with yourself, honor your feelings and seek things that bring you joy and comfort. For me self kindness means using positive affirmations and prioritizing activities that inspire an open heart. By making time for self care I also ensure that I’m not leaning too heavily on my husband in order to get my needs met.

Action: Each day do something that expresses self kindness and compassion. In the morning I like to ask myself: what would I like to do today? When a response solidifies in my mind I make the intent to follow through with it. In this way I show up for myself as a friend.

When I need help feeling compassion for myself I can think of how I would respond if someone else I cared about was in the same situation. Imagining this gives me insight into what self kindness looks like, and illuminates the ways in which I can treat myself lovingly.

Words: “I love myself. No matter what I am going through I can respond with kindness. I have the intent to keep an open heart towards myself and my experience.”

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Taking myself out for an organic espresso and time for reading or journaling is one of my favorite “self-dates.” By offering myself friendship, I practice self kindness and encourage an open heart.

Lovingly, Lower Your Expectations. 

It’s natural to seek relief. When we are hurting we all want to be comforted and soothed. When I’m experiencing intense symptoms or prolonged stress I will crave escape. That may look like a desire for my husband to whisk me away, be spontaneously romantic, or extra affectionate.

However, in most cases when my suffering increases, so does my husband’s. Not only might he not have more to give, he may be desperately wanting the those same things from me!

Lovingly lowering my expectations doesn’t mean I don’t deserve extra love and comfort. It just honors that we all have limitations in what we can give. If you’re in a committed partnership, chances are you’re both doing your best. Chronic illness is just that hard.

In my experience, harboring high expectations during difficult times, usually leads to resentment. When I see the situation for what it is, and take my husband’s feelings into account, I find that my expectations are more realistic.

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Living with chronic illness is hard. It just is. And some days its harder than others. Having acceptance may not change the situation, but often it changes how we respond to it.

Action:  Speak to the fact that things have been hard. If you’ve been noticing that you’re feeling drained, it’s likely that your partner is experiencing some form of burn out as well. If this is true, you’ll both be able to relate.

Talking openly about how difficult, stressful, and/or scary things have been isn’t necessarily easy. But acknowledging the very real challenges chronic illness presents is important and strengthens emotional intimacy. Connecting openly and honestly about our struggles can often relieve built up tension within the relationship. And when we share our truths, it helps to facilitate expectations that are reasonable and kind.

Words: “I recognize that I am doing my best. I also recognize that my partner is doing his/her best.”

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I love getting flowers when I’ve been feeling really sick. Sometimes I have to remind myself that if Wonderhubs doesn’t bring me any, it’s not because he doesn’t know I’m suffering. It just means he’s struggling too.

Get support.

Understand that the challenges you are facing while navigating chronic illness are real. And they are big. If despite your best efforts things are still a struggle, it’s likely a sign that more support is needed. My husband and I are living in a city where we don’t have any close friends or family, and so finding the support we need has been difficult.

Having some one you can call on to help with dinner one night, or just to come over and laugh with, makes a huge difference. When I’m experiencing burn out, especially when coupled with loneliness, it’s incredibly hard for me to keep an open heart.

Action: Seek out support. Whether it’s letting family or friends know you could use some help (or some fun,) looking into receiving home care from a caregiver, or finding a couple’s therapist to work with, take steps to get the support you need. We have done all of these things, and even if it’s scary at first, it’s been worth it.

Staying focused on our desired outcome, be it a deeper connection, increased intimacy, or simply less stress and more joy, helps us to reach out when we need to.

Words: “Asking for help is a sign of strength, not weakness. I deserve to receive support and so does my partner. I deserve happiness within my relationship and am willing to take risks to work towards it.”

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Where there is love there is a way. No matter how intense things get, as long as we make an effort to keep our hearts open, we can count on loving-kindess to guide us.

Have you noticed the ways in which living with chronic illness can close you heart? If so what are some of the practices you use to stay connected? I’d love to know, so please share in the comments below.

I’m wishing you wellness!

“There is love in everything, and when we really live and view life with an open heart (and live in our truth), the light illuminates the way.” ~ Kasi Kaye Iliopoulos

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4 thoughts on “In Sickness & In Health: Chronic Illness and Keeping an Open Heart

  1. I love this blog entry you have shared with all of us. For me I need my quiet time and space and needs ro remember to take good care of myself by eating healthy foods, walking and praying to Jesus and being grateful. It is best if I can start my day on this path and I feel better all the way around..,I end up more caring to my husband also. I also love the idea of looking at photos and will make a special album just for doing that….when we are in a funk, it is hard at times to find joy and this could be very helpful to have a “Joyful Memory” album. Thanks again! ❤️

    1. I am so glad this was helpful to you. When I was writing I wasn’t sure how much other couples struggles, but I figured if it was hard for us, it must be hard for others. It sounds like you have AMAZING self care practices, love hearing it! And even though it seems like a simple thing, the photo album really helps. Wishing you wellness!

  2. This post is so genuine! Your blog is just plain awesome 🙂

    I think I had a brief opportunity to meet you & your husband at Sophia back in August. Or it was probably somebody else haha terrible memory thanks to Lyme

    Dev

    1. Aww, Dev you’re response has warmed my heart so much. Thank you. I see Dr. S who works at Sophia but I haven’t actually been yet as I see her at her private office in Seattle. Might you have met me there? And no worries, my memory is the same way #lymebrain. Xx

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