It’s a role reversal of sorts. You’re chronically ill but you need to take care of someone else. It isn’t easy, but it can done. And the best part is that there is something transformative about providing care to others – especially when you are accustomed to having someone take care of you.
In spite of its many variations, the common denominator of all chronic illnesses is their persistent nature – their “chronic-ness“. So we learn to accept living in a state of flux. Sometimes we do it with grace. Other times, our approach is decidedly inelegant. After all, we are trying to find our way through a maze whose pathways lead to barriers we can’t anticipate.
But part of accepting our chronic condition means accepting a couple of truths:
First, we have to modify our lifestyle to accommodate our chronic illness, because (like it or not) it’s our lifelong companion.
Secondly, we’re still going to need help from others to fill in the gaps – the space between what we used to be able to do and what we’re no longer able to do without having some help.
But what happens when you need to take care of someone else? How do you shift from being the person who needs care to being the person who gives it?
What I’ve learned about how to take care of others when you’re chronically ill.
I was diagnosed with myositis in October of 2018. My health had been declining for about two years. By the time I received my diagnosis I could barely function.
I spent the last half of the month in the hospital. When I got home I needed help doing everything. I wasn’t strong enough to walk up the stairs. I couldn’t dress myself without help. Being on my feet, even for a few minutes, rendered me breathless. My neck muscles were so weak that I couldn’t easily hold my head up.
I had begun a long course of high-dose steroids and infusions to reduce the inflammation and quiet my immune system. But it would take time – several months to begin to see real progress.
Over the next few months I did make significant progress, but I was still weak, fatigued and short of breath.
I had no idea that I’d soon be in the position of having provide care to someone else
My husband’s hobby is cycling. Hobby may not even be the right word. It’s his passion. Over the past 20 years, he’s logged thousands of miles on his bike. But accidents happen – and he had one. He ended up breaking a few ribs and bone in his pelvis. Fortunately he didn’t need surgery but he would be relegated to crutches for a while, and certainly wouldn’t be spending much time on his feet.
I would be stepping into a role where I was giving care – a big departure from where I’d been. I was fortunate in that I knew that this would be a temporary role, and I want to fully acknowledge that it would be far more challenging to be a long-term provider of care.
And although it was a temporary situation, it pushed me to think from a caregiver’s perspective.
1. Make peace with some uncomfortable emotions
I’d be telling a shameful lie of boldfaced proportions if I didn’t admit that I was resentful.
Resentful because he had put his hobby first – and this was the second accident he’d had in five months. (He’d had an accident about a month before my diagnosis, and had broken his clavicle.)
I was resentful because I still needed so much help myself.
But mostly, I was resentful because he had the gift of health, and once he recovered from his accident, he’d be back on the bike again. Healthy, full of energy, and completely mobile. Training for a trip he’d planned for May, where he’d travel to Italy to cycle with a group of his friends. I couldn’t walk the length of our driveway without struggling to breathe, and he’d be cycling in the Italian Alps for the better part of two weeks.
If you are chronically ill and need to take care of others, you will need to acknowledge and accept the emotions you’re feeling – whatever they are. Maybe you don’t feel resentful, but you feel burdened. Or maybe you feel angry at your body because you feel ill-equipped physically to provide care to someone else when you need someone else to provide care for you.
Name the emotion. Process how it makes you feel. Accept that you are human – and know that it’s okay to feel unpleasant emotions.
2. Focus on what’s important
When we take care of others, we are taking care of them physically and emotionally. If you’ve had to have others take care of you, the good news is that you know that these are equally important.
If you’ve been in the “patient’s” shoes, you recognize how much it means to you when a caregiver understands your emotional needs as well as your physical ones. And each of us has different and unique needs.
Have an honest discussion about the level of care needed, and what’s important to the person you’re taking care of. And don’t forget to talk about limitations you may have in providing that care.
You won’t be able to do it all – at least not without help. Decide what the priorities need to be. Since many of us who are chronically ill suffer from fatigue, pain or other limitations, we need to think about how to make the best use of our limited energy given that we will need to direct much of that energy to taking care of someone else.
Something’s got to give.
Simplify your meals. Take advantage of online grocery shopping. Recognize that a little extra dust in the house is okay. Take the time to make a list of your priorities. Do what you need to do first. Then do what you can do. You may not think it’s enough. But it will have to be.
As for the things you can’t do, ask for help. How many times have people asked you how they can help? People want to help. Don’t be afraid to ask for some assistance. If you have children, they can help with age-appropriate tasks.
One of the most unexpected gifts of taking care of someone else is that it offers an opportunity you should never say “no” to: the opportunity to connect with or reconnect with the person you are providing care for. Focus on that connection. Long conversations, enjoying a meal or a movie together, quiet time shared in the same space. These can be low-energy but high-impact moments.
3. Take care of yourself
If you’ve lived with chronic illness for any length of time, you know your body and its limits. You may be able to sense a flare-up. Chances are that you’ve made the mistake of fooling yourself – pushing too hard but then paying the price.
Use your spoons wisely. You cannot help anyone else if you are depleted.
So many chronic illnesses are invisible, and we worry that because we don’t look sick, other people may not understand how we feel physically and why we’re struggling. And that’s okay. Let it go. Trust yourself. Pace your activities.
4. Find the joy in taking care of others
Because really, there is! When we take care of others we shift from the “me” to the “you”.
We pivot, and we direct our attention and our energy to tending to someone else’s needs. It forces us – even if temporarily – to reframe our own needs and challenges, safely moving the “patient” aspect of who we are into the passenger’s seat while we allow the “caregiver” to slip behind wheel.
After my husband’s accident, I had to step up. It wasn’t pretty. There were many times when I felt as though I was dragging my body, beckoning it to cooperate so that I could resume doing things that I had become reliant on him to do. I had to rely on my daughters for help, too, but they were both full-time students.
I don’t know how, but I roused enough energy and stamina to get by. And I have to admit, it helped me in my own process of healing. It helped me physically because I was forced to move, to use muscles that needed to be strengthened. Physical therapy is one of the standard components of treatment for my condition.
And it helped me emotionally – because providing care to someone else gave me a renewed sense of purpose. It extended beyond me, beyond the laser focus on my own healing and aching desire to reclaim my health and return to the normalcy of my “old” life.
Our chronic illness is just one part of who we are. It’s easy to let all of the ways in which it limits us take center stage. But what it does not limit is our ability to minister to others – to whatever degree we are capable of – from a place of understanding and empathy.