Reposted from: https://witanddelight.com/2020/12/how-to-practice-self-care-when-your-partner-is-chronically-ill/
In sickness and in health.
When reciting this particular vow with my now-husband in August, I was blissfully unaware of how soon we’d be facing the sickness part.To make a long story short, just a few weeks after our intimate civil wedding in Denmark, my husband was diagnosed with a blood clot in his brain in addition to dangerously high brain pressure. While he had been experiencing inexplicable neck pain throughout the whole month of August, even on the day of our wedding, we had both attributed it to generalized stress—nothing more.
We knew that something was very wrong, however, when his neck pain continued to worsen and he began having double vision. At the urging of my husband’s house doctor, he checked himself into the esteemed university hospital here in Hamburg, Germany, where we live, and that’s when reality quickly set in.
As I write this, it’s been a little over three months since his diagnosis. While three months may sound like a blip on the radar to most, it feels like an eternity when the person you love is chronically ill. From his six-week stay in the hospital to the endless amount of spinal taps he continues to endure on a routine basis, my husband’s road to recovery is admittedly long and uncertain.
So what do you do when your partner is suddenly grappling with a health crisis that neither of you were remotely prepared for? While I’m by no means an expert, I’ve learned the hard way that the only way to be an effective caregiver is if you take care of yourself, both physically and mentally.
In other words, it’s all about practicing self-care.
Allow Yourself to Grieve
While the grieving process is immediately understood and accepted for the partner who is physically ill, I realized that the same isn’t always said for the “healthy” partner. Just as my husband began grieving his inability to be able to live life as he knew it, I admittedly found myself in a state of grieving, too.
While I suppose I initially grieved our loss of normalcy and everyday routine, I realized that I mostly grieved the fact that we couldn’t enjoy our new life as a married couple. Even looking at photos of our recent wedding day, where both of us were so happy, only made me want to burst into tears. It seemed so unfair, that our one bright spot of 2020 was overshadowed, not by a global pandemic but by a neurological condition that neither of us knew he had.
My advice? As the “healthy” one, allow yourself time to properly grieve. Feeling guilty about doing so only makes things worse. Remember that just as your partner’s life has been turned upside down, so has yours. While you may not feel the physical pain, you feel everything else. The highs, the lows, the in-betweens. Recognize that you’re both on this emotional rollercoaster together and that some days will be better than others.
My advice? As the “healthy” one, allow yourself time to properly grieve. Feeling guilty about doing so only makes things worse. . . . Recognize that you’re both on this emotional rollercoaster together and that some days will be better than others.
And yes, it’s OK to grieve for that time in your life where you weren’t faced with daily hospital visits, tough conversations, and extreme bouts of pain. This, too, is part of your healing process.
Don’t Be Afraid to Seek Professional Help
Within the first two weeks of my husband’s diagnosis and him returning home from the hospital, now on high dosages of medication with their own set of side effects, I decided to reach out to my former therapist in Stockholm, Sweden.
She had gotten me through a terrible breakup years ago and given me the tools necessary to cope, so I thought now was as good of a time as any to reach out. Thankfully, I heard she was taking phone calls with her clients, due to the pandemic, so we arranged a time to chat when my husband was at a doctor’s appointment.
After explaining to her the serious situation we were both now facing, wracked intermittently with sobs, she gave me a piece of advice that I still hold onto dearly to this day.
“Now is your time, Erin, to practice ‘extreme kindness,’” she told me in her lovely Scottish accent.
At first, I didn’t quite understand what she meant and told her as much. She went on to say that when someone experiences high levels of physical pain, the type that my husband was sadly experiencing, they’re not cognizant of how they respond or react to outside help (ahem, me).
She explained that pain is paralyzing, rendering the person who is in pain utterly unable to empathize. When she said this, it was like a lightbulb went off. I realized I had been so distraught at my husband’s recent withdrawn behavior and his cold demeanor that my initial reaction was to be angry and frustrated toward him, which only made things worse between us.
My therapist’s advice of “extreme kindness” was not to be confused with letting my husband get away with being unkind or unreasonable. Rather, it was more about reminding myself that when my husband was experiencing these episodes of pain to not take his behavior personally, and to instead silently remind myself that he “doesn’t mean what he’s saying,” “he loves me dearly,” or “this too shall pass.”
After our call that day, I was able to put into practice what my therapist had advised me to do, which became a lifesaver. Being able to talk to a professional about my fears, frustrations, and concerns not only helped me to feel better but also made me a better support system for my husband.
Remember that therapists are trained to help people cope with these very sorts of situations and can impart wisdom you might otherwise not get from your close friends or family members.
Find Your Outlets
Speaking of friends and family, when I first told them about what had happened with my husband, their reactions were more or less the same:
“Are you OK?”
“Can I do anything for you?”
“Do you want to talk about it?”
While I was so appreciative of all the outpouring of love and support I received, both near and far, I also felt exhausted. When you and your partner are faced with a chronic illness, you can’t escape it. It’s quite literally all around.
This is when I began to realize how important it was that I had my own outlet, where I could switch off when I needed to and take time for me. This meant visiting my favorite infrared sauna here in Hamburg and listening to guided meditations on my Calm app, watching a 90 Day Fiancé episode (my reality T.V. show guilty pleasure), or even taking a long bath before bedtime.
While these may all sound like minor things, I cannot tell you how restorative it was for me to establish this “me time.” So whatever it is that you find helps you to unwind and recharge, embrace it wholeheartedly.
Take Solace in Support (If You Feel Like It)
When my husband was in the hospital for six weeks, I was beyond grateful to have my group of girlfriends here in Hamburg who promptly took me under their wing and offered support.
Whether that was a home-cooked meal (I’m not much of a cook myself; that’s more my husband’s territory), or just the offer of a long walk around the neighborhood, my friends stepped up to the plate, big time.
This didn’t mean that I took them up on every single invite, however. In fact, just knowing my friends were either a phone call away or just next door (yes, two of my best friends happen to live in our apartment building) served as a simple reminder that I didn’t need to go it alone. I had support, whenever I needed it. (I also want to give a big shoutout to my family and friends who aren’t here in Hamburg; I feel their loving support each and every day.)
I cannot stress this enough but finding a support network, however big or small, can make a world of difference when your partner becomes ill. Sure, they may have trouble relating to what it’s like to be a caregiver but what they can provide you with is a shoulder to cry on and a set of ears to listen.