For Carers, Whom I Love

Being a carer is hard work. As a person living with lupus, I’m acutely aware of how difficult my illness is not just for me but for others, especially for those who care for me.

It’s not just physical caring either (showering, toiletting, etc.). Caring takes many forms, including emotional caring (supporting someone in distress), logistical caring (providing transport to appointments, going shopping) and financial caring (paying bills, supporting them financially).

In my books, there’s also mental caring. Loving someone who is chronically sick takes up headspace. You’re tracking their symptoms and, if you’re lucky, progress. Perhaps you’re thinking about when their medication runs out or when they are next due to see their doctor. Maybe you’re researching treatment options. That stuff takes a hefty cognitive load.

Spiritual caring is a thing too. Praying for someone, supporting them pastorally, rallying the Church when your loved one is acutaly unwell—it’s all caring. And I don’t care how strong or loving you are, caring takes a toll. Because it’s relentless.

I was recently reminded of this when I attended a book signing at Hub Library in Adelaide. I spoke for a few minutes at this event, sharing my writing journey and what compelled me to write in the first place (spoilers: it was singledom, childlessness and chronic illness, in that order). Then I took questions.

There were none. I thought: this is either really good or really bad.

Then I invited people to come buy my books. And they came! They saw! They purchased! What stood out to me is how many people bought books for others, especially loved ones. One lady told me she was buying Surviving Chronic Illness for her daughter who lived with lupus. Not only did my heart go out to my fellow ‘lupie,’ but I was touched at this mother’s act of love and compassion in buying a book that might help. I hope it does.

I have such love for carers. I have been both a giver and receiver of caring myself. It can be a hard thing to navigate, especially when you have your own life filled with stressors and curveballs. But these are my top three things that can help:

1.        Laughter. It’s simple, it’s free, and it goes wherever you go! There have been so many times when my overwhelming pain and distress has been broken by the joking and tomfoolery of a friend or family member. Better than any pill, being able to smile can bring relief and respite when nothing else can. Never underestimate the power of laughter.

2.        Self-care. Chocolate, extra sleep, space apart—whatever your self-care is, make sure it’s frequent and guilt-free. Your loved one’s chronic illness is just that—chronic—which means you need strategies for the long haul. Take lots of breaks, more than you think you need. Cut yourself some slack.

3.        Solidarity. The more support people you have, the better. Even if you think you’re doing just fine and don’t need anybody—trust me, you need them. You need someone to whom you can vent on a regular basis without them problem-solving your life. They can distract you, take care of you for a change, and bring the laughter and self-care we have already discussed. Bonus points if your support crew also have lived experience of caring.

You might have noticed I didn’t mention God in my top three, but for me, he is implicit in them. He can bring joy and relief. He can show us his care. And he can definitely bring his empathy to the table, not always ‘fixing’ things but deeply concerned about those things that deeply concern us.

If you are a carer, I hope you can find something or someone to take care of you for a change, help you set boundaries, and prevent that nasty burnout which so many carers experience. Because what you do is hard—and at the same time, you are awesome. No matter what curveballs come your way, I hope you remember that.

Carers, for all you do, thank you.

Do you have lived experience of caring? How does the ongoing caring role affect you? What small things can you do to care for yourself today? Share your story. Let’s have a countercultural conversation.