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How to Practice Self-Care When Your Partner is Chronically Ill

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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.

 

7 Ways to Support Yourself as a Caregiver During a Pandemic

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Reposted from: https://www.psychologytoday.com/ca/blog/widows-guide-healing/202101/7-ways-support-yourself-caregiver-during-pandemic

If you are a caregiver you may feel alone, but in reality, you’re not. According to AARP, in 2020 there were approximately 53 million adults living in the United States who were caregivers. And the emotional isolation caregivers often feel, especially during this pandemic is important to discuss.


Image from: Landmark Health

Caregiving presents itself with a unique set of challenges because all too often caregivers are left alone to troubleshoot problems, remedy emotional pain, and generate comfort when the prognosis is poor. In addition, caregivers receive little to no positive feedback about the duties they’re performing, which makes it hard to feel appreciated or know the work they’re doing is high quality.  And since caregiving often requires one to react to a crisis, they are often left to feel anxious or scared.

During the pandemic, with the extra layer of COVID-related fear and with the limitations as to the type of support one can receive, the intensity of providing care has increased. For example, patients may not be able to get some services because of COVID-19. Therefore, a greater burden is on the caregiver to provide for things like an extra meal, a haircut, or spiritual guidance. Caregivers are also in unchartered territory when it comes to easing angst related to coronavirus. The patient is often worried a visit from a loved one could leave them or their caregiver ill.

And the type of social support one can receive is limited due to stay-at-home orders and general fears about getting COVID-19. Caregivers are now tasked with figuring out, if possible, safe ways to interact. Now more than ever, the need to help caregivers feel empowered is critical for their overall well-being and for the well-being of the person receiving the care.

Here are seven tips to help caregivers feel empowered (in no particular order).

Remind yourself of what you can control.  Becoming clear about what you can and can’t control will give you a sense of empowerment. It may be the route you take to the doctor’s office, where you park, what you wear or when you eat. While these may seem like small things, remembering that you can make good choices will give you a sense of success. If needed, you can text yourself the list as a gentle reminder.

Identify what makes you feel better.  Create a short list of items that make you feel better. Items on the list can include a song, a photograph, a prayer/ mantra or a passage in a book. These are things that you can go to for a few seconds during the day. Even though it might only be for a few moments, it can help you pause. You’re giving yourself a time out. Creating these moments where you feel brighter can help your overall well- being.

Notice how you feel after sharing your story. Since most conversations are happening in a virtual world, this means you’re texting or using your screen more than usual. This can be both beneficial and stressful. Repeating and providing updates can be painful at an emotional level. And while you may not notice it at the time, you may feel depleted later. So, if you find these types of conversations to be draining, find a few select people you can “go to” and share with others as needed.

Take very short breaks as often as possible. While it may not be feasible to leave the place where you are providing care, taking short breaks to focus on something else can help you gain a sense of control. You may even want to use your phone to set a timer as a reminder to pause.

Focus on your breath. When I was caring for my (now late) husband, I remember one moment shortly after I found out his cancer diagnosis was terminal where I ran into the hospital bathroom stall and realized the only physical thing (at that moment) I could control was my breath. As simple as it sounds, knowing I could control my breath was powerful. By slowing down my breath, it helped to calm my central nervous system, which benefited me both physically and emotionally.

Choose a favorite song to listen to, sing, or hum. Music impacts mood, and when we feel better it can help to lower the intensity level of an anxious moment. The words you chose to repeat or listen to can bring about a smile and elevate your mood.

Seek help.  Trying to do everything on your own can lead to frustration and create more stress. Help can come in various forms, from online professional guidance or a telephone call to a local pharmacy to a text from a friend. Since so many services are online, the ability to get a number of opinions has increased. For example, if you need help with groceries, don’t be afraid to ask if someone knows of a reliable grocery delivery service. Or if you need professional mental health services, online counseling services are now available.

Reminding yourself that it is okay to live in the needs of the day is also important. By giving yourself grace when things don’t go as planned, you will be able to give yourself and your loved one the best possible chance for experiencing comfort.

 

The Challenges of Living with Invisible Pain or Illness

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The chronically ill and those who care for them often live in an invisible world

Written by: Toni Bernhard

Reposted from: https://www.psychologytoday.com/us/blog/turning-straw-gold/201109/the-challenges-living-invisible-pain-or-illness?fbclid=IwAR0OwHJLE4FJ9q-qOLJtkAVoB3BX0s-DkpyTIYUQ_cfPysnDoZodV-EPVX8

Most of us who live day in and day out with chronic illness—which includes chronic pain—don’t look different from the healthy people all around us. I remember seeing tennis great, Venus Williams, on television, watching from the stands as her sister played in the U.S. Open tennis final. Williams had recently been diagnosed with Sjögren’s Syndrome, an autoimmune disease. The announcers were talking about her illness as the camera moved in for a close-up. As I watched, I was certain that most viewers would be thinking, “But she doesn’t look sick.” I’ve met a women online who suffers from Sjögren’s Syndrome, so I knew that Williams was facing a hard—and a largely invisible—struggle.

What are some of the consequences of living in the invisible world of the chronically ill?

Guilt and embarrassment

Being repeatedly told that we look and sound fine can lead us to think it’s our fault that we’re sick or in pain. We can be overcome with guilt, as if we’re failing those we care about, and we can feel embarrassed that we’re not living up to what we’ve convinced ourselves other people are expecting of us. The culture around us reinforces these feelings of guilt and embarrassment by sending the message that no one need be sick or in pain. We’re bombarded by news stories and advertisements telling us that we need only do this or do that in order to be healthy.

This expectation of health is especially hard on young people. Until I became chronically ill myself, I never realized how many young people struggle with their health. (I write about the extra difficulties they face in “The Extra Burdens Faced by Young People with Chronic Illness.”)

Having convinced ourselves that we’ve let them down, we may even feel guilty and embarrassed around our loved ones. I had to overcome the terrible guilt I felt over not being active in the lives of my two grandchildren. I had so many fantasies about what we’d be doing together. My oldest grandchild, Malia, lives in the city where I grew up—Los Angeles. I thought I’d be taking her to all my favorite places. My youngest grandchild, Cam, lives in Berkeley, only about an hour from where I live. I thought I’d be riding cable cars with her in San Francisco and going on Bay cruises that would take us right under the Golden Gate Bridge. Instead, I see her when my son’s family visits me in Davis.

When I finally realized that it was not my fault that I was sick, I was able to shed the guilty feeling that I was letting my granddaughters down. Once I did this, I was able to embrace my life as it is—sickness included. This freed me to look for ways to connect with Malia and Cam that didn’t include seeing them in person very often.

Frustration at the lack of understanding.

The “list of misunderstandings” is a long one. I wrote about some of them in “Six Common Misconceptions about the Chronically Ill.” Here are four more, particularly related to the invisibility of our medical conditions.

Illness-related pain and debilitating fatigue are not cured by engaging in strenuous exercise, although I’ve read many accounts of doctors who have prescribed this very treatment. This lack of understanding from the medical community can have serious, even fatal, consequences because we may become gun-shy about seeing a doctor when a new symptom appears—one that could be a sign of a life-threatening medical problem, unrelated to our current illness.

Second, we may be treated as malingerers by family members, friends, employers, the medical profession, even the general public. After I was interviewed on a local National Public Radio show, I received an email from a listener, telling me that he didn’t want his tax dollars going to support “an amotivational slacker.” Whoa. I was confused: Did he mean I was an “amotivational slacker” as opposed to a “motivational slacker”? I’m making light of his comment now, but at the time I read it, it stung—badly.

Third, people in chronic pain are often misunderstood and mistreated by the medical community. They get labeled as “drug seekers” in emergency rooms and, as a result, are denied much-needed pain medication.

Lastly, we face misunderstanding over what it means to be disabled. Just because we’re too sick to work and be active for extended periods doesn’t mean we can’t sometimes go out to a restaurant or have people over. This misunderstanding can have tragic consequences. I’ve read about people who’ve had their long-term disability payments revoked because an investigator who was sent to check up on them saw them being active in some way, perhaps going to the store.

I’ve learned that the burden is on those who are chronically ill to make the invisible visible to others. This entails educating people about chronic illness, although it’s good to remember that some people may never accept that we’re disabled by invisible pain or invisible illness. This inability on their part is about them, not us. They may not have had an experience with illness; it may scare them and remind them of their own mortality.

The kindest thing we can do for ourselves when people disappoint us is to accept that disappointments are an inevitable part of life and then cultivate compassion for ourselves over any suffering we’re experiencing as a result of their lack of understanding about what it’s like to live with invisible pain and with invisible illness.

Notes from HBR podcast – “We’re Beyond Stretched”

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Podcast – We’re Beyond Stretched, Harvard Business Review

https://hbr.org/podcast/2020/04/were-beyond-stretched

  • Feel like I can’t complain when others have it so much worse, so I swallow my pain
  • Have to be there to support others
  • Things like food prep for family and household tasks taken for granted or go wrong so end up doing it oneself
  • The idea of boundaries is just that, an idea, not the reality
  • Gender roles kick in, intensified, no escape
  • Women’s work in the home is undervalued, remains out of whack
  • Roles are often adopted early in the relationship and don’t seem to be renegotiated
  • My work comes last, what about my career, my professional self?
  • Expected to deliver at work, prove yourself over again
  • Work was or can be the only place you feel competent, in control, making accomplishments
  • Committed to a high standard, to the point of exhaustion
  • Losing sleep, mental health impacted, self-care dropped, optimism lagging, feel the need to limit my feelings
  • “Emotional labour” – uncertainty, pressure, all things to all people, patience is “whisper thin,” feel guilt for not showing up 100%, shame, overwhelmed, scattered, lack of focus, added burden of keeping track of others, inside and outside the home, literally hiding from children
  • The days aren’t punctuated as they once were – commute, work, leisure, etc. – begin to blur together

Advice for individuals:

  • Accept help when it is offered, avoid “superwoman” trap
  • Focus on what you managed to get done, not what you didn’t get to
  • Tell yourself “you are enough” – getting through the day, remembering to eat, managing to shower (Baking bread and making crafts is for the people that can manage it
  • Challenge the status quo. Find ways to re-contract. This is all new, clean the slate and rebuild it

Advice for managers:

  • Flexibility in hours of work and deadlines
  • Don’t presume what others need or what they can do – ask the question
  • Give permission to say no or not now – and ensure it’s real and won’t bite them later
  • Make allowances for children and pets, don’t judge
  • We are playing the long game; sustainability, employee engagement and loyalty are most important
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