I am one of the luckiest of the chronically ill card holders, in my opinion; because throughout my time dealing with chronic illness, I haven’t faced it on my own. Prior to getting sick and for the whole time since I have had the amazing fortune of being in a loving partnership. For almost 24 years now I have had the same, steadfast, and supportive woman by my side. She has loved and cared for me as a person with and without disabling conditions and I could spend the remainder of my days writing about how these illnesses impact our relationship, life together, communication, our sex life, the future we had planned, how we deal individually and as a couple, and still not run out of material. So, this will be the first, of many posts, specifically focused on what it is to live in a committed relationship and deal together (and individually) with chronic illness.
We went into my illness with more than a dozen years under our belt. Because of this we had already weathered some of life’s biggest ups and downs together. We’d figured out how to handle our money, where we each stood on matters of religion, children, and politics. We had purchased a home together, lived out of the country, and even survived infidelity. We’d been through some shit. At the time I got sick, we were going through a home study in anticipation that we would adopt children together. We had worked on and honed our communication – and thank god for that. Because every bit of our best habits of communication have been tested in the ensuing years.
We are married and did promise in our vows to be together “in sickness and in health.” In so doing, I imagined the ways I saw my grandparents care for one another in their twilight years. My grandfather sacrificing many things to care for my failing grandmother in their later days. Knowing, for example, that he called someone to come stay with my grandmother (who had Alzheimer’s) before he called an ambulance one night when he had a stroke. What I didn’t picture was all those images of intensive care beginning in our mid to late thirties and potentially continuing for the rest of our lives. Sickness descended and we were living in a whole new reality.
For us, here are some of the ways we have weathered this unyielding storm. A commitment to honest, clear communication about everything is part of how we navigate. Whether it’s perfunctory, like talking about the calendar for the week ahead and how I’ll be getting to my appointments, or intimate, like exposing to her the depth of my despair about our sex life and my failure to achieve orgasm, dialogue is central to making our relationship run smoothly. We work to accept responsibility for our behavior, the impact of our behavior, apologize when we’ve done something wrong, and really mean to be a teammate to one another – working to make the other’s life easier and more enjoyable. Even when it’s something hard to be honest about or that we’re afraid the other one will be hurt by or won’t want to hear, if it’s something we’re stewing on or would consider talking to one of our friends about, we talk about it together.
You’ve heard me say it is my most precious natural resource. That’s true of all of us – just in a shorter supply for those of us with chronic illness. Therefore, the things I give my time and attention to take on greater significance – not just for me but for my wife, too. Assessing each day what my capacity is and working to meet but not exceed it (and therefore send myself into a situation where I have to rebound or recover from my actions) is part of why body scans and staying connected to my experience is so important. Here too, communication with my partner is key. I may feel inclined to use some of my energy to clean out the dishwasher, thinking it would be nice to help out around the house. However, if I don’t check in with her, she may be frustrated that I spent my limited energy on that kind of task when I could have spent it doing something with her.
The prioritizing of time and energy spills over into this next one as well – how do I figure out with whom to spend what limited time I have? Self-care is of critical importance. Finding ways to contribute to my well-being mentally, emotionally, spiritually, and physically, are all key in helping maintain over the long-haul of chronic illness. Sometimes self-care means putting my needs over the needs of my spouse. That might mean taking time alone or with a friend when I have energy to spare (or perhaps even when I don’t) instead of spending it with my wife. Sometimes this has negative consequences ranging from recovery time, to animosity about how I chose to spend my time. These are difficult outcomes to try and balance while also trying to assess and meet some of my own needs. Again, coming back to good communication and being teammates are paramount.
I cannot overstate how much having a sense of humor serves us. Whether it’s being able to laugh at myself for some ridiculous thing I just did (put pain relieving gel on my toothbrush), to being able to look for ways to crack her up, laugher is, as they say, the best medicine. Even when it hurts (from sore muscles, a broken rib, or an incision) laugher is healing. In those moments we are transported, our mind is not on our pain, our illness, our suffering, but is instead on something that is light, shared, connecting. It can mean the change of perspective and the ability to leave our circumstances – even if it is fleeting. Seeking joy is part of what drives me and laughter the gooey caramel center of joy; it is infectious and can remind me not to take myself too seriously. Even in our darkest (perhaps especially in our darkest) hours, finding the humor in a moment can palpably shift the energy. Maybe it’s one of our favorite shows, recounting something that happened that day, making fun of ourselves, or sharing in a remembered inside joke, the relief found in laughing together, is real.
Finally, for us, returning always to gratitude for one another, helps enormously. We work to find ways big and small to thank one another and show appreciation in our daily routines. On my YouTube channel I talk about a couple of our habits in this regard. Whether it’s our fictious “wife of the year” award that we are competing to win by out-loving the other, or healing habits of making amends after we’ve had an argument, we endeavor to not take one another for granted. Part of this habit means counting our blessings, and re-counting them, out loud, to one another. “I’m thankful for this meal you prepared,” “I’m so glad we got a few minutes together,” “I appreciate you helping me with that.” We make an effort to notice and then acknowledge one another in big and small ways every day.
What about you – are there strategies of being together that have kept you afloat? What are the things keeping you connected? For those of you in partnerships, I hope this gives you some fresh perspective or a renewed commitment to healthy habits you already have. When our burdens are shared with someone else, it doesn’t remove them, but it does make the travel a bit easier, the weight seem not so heavy. I am so lucky and grateful that I am not walking this part of the path alone. While I my mind often goes to the guilt and loss my marriage has suffered from me being sick, we have learned a lot from this hardship of chronic illness. Having watched other couples, friends of ours, endure chronic and life-threatening illnesses in their relationships it seems like these kinds of crises can either rattle you apart or draw you closer together. Here’s to working toward being part of that later group.