When someone you love has a chronic condition, your heart breaks with wanting to help them. However, when their doctors can’t ease their pain, there’s little you can do to alleviate their suffering.
Caretaking takes a severe mental and emotional toll. Sometimes, you can feel like you’re walking a tightrope between supporting your loved one and tending to work and other responsibilities, including taking care of yourself.
So how can you prevent burnout when you love someone with a chronic condition? While it certainly presents challenges, there are ways to protect your mental and physical health while helping someone else who’s struggling to do the same.
Practice compassionate empathy
There’s nothing wrong with having empathy—the world sorely needs more of it. Nonetheless, while it’s positive to feel and understand the suffering of others, you can begin to experience the same adverse health effects if you internalize their pain to the point that it becomes yours.
Experts define three types of empathy—cognitive, emotional and compassionate.
Cognitive empathy occurs when you watch a movie and put yourself in the shoes of the protagonist. Emotional empathy is perhaps the most potent, but it’s also potentially dangerous—it occurs when you feel the emotions of others as if you were living their experience. This form of empathy frequently leads to burnout, because you still carry the burden of other independent stressors. There’s enough pain in any life for one person to manage, so shouldering another’s burden can literally exhaust you.
Compassionate empathy, however, spurs you to take action to help. Like an internal alchemist, this form of empathy energizes (as opposed to draining) you, and makes you ask, “How can I ease this pain? How can I solve this problem?”
Harnessing compassionate energy will make you a powerful ally for your loved one and other chronically ill patients. Many pain patients have encountered more than their share of people doubting and minimizing their experience and accusing them of seeking attention. Migraine patients often hear, “Oh, I get headaches, too,” from people who don’t understand that the disease causes a host of other symptoms, many of which are far more debilitating.
So how, exactly, do you practice compassionate empathy? Try the following exercise the next time you feel yourself growing overwhelmed to the point at which you want to snap at your chronically ill loved one.
- Ask them, “What is the problem right now?” When your loved one is chronically ill, you’ll endure more than your share of crises. Focus on the present one only.
- Ask them, “What can I do to help?” Are they moaning that they’re thirsty? Can you get them a glass of water? If you can’t give them a ride to a doctor’s appointment, can you arrange for alternate transportation?
Use the energy from feeling terrible about your loved one’s fate as inspiration to take meaningful action. Sometimes, you’ll need to accept the situation in the same way that they have to recognize they may never get well. Other times, though, you can find an innovative solution, much like a grain of sand encourages a clam to make a pearl.
Discover and share your communication style(s)
Sometimes, you may grow exasperated with how your loved one expresses themselves. If you tend to express yourself directly, you might see nothing wrong with saying, “Reducing your consumption of simple carbs could help you manage your Type 2 diabetes.” But if the person you care for takes a more indirect approach, they may interpret your statement as insensitive or harsh, even downright rude. You might do better with, “Why don’t we have veggies and hummus for a snack?”
A helpful activity to do is take a communication style quiz together and discuss the results. You may discover insights that help you understand behaviours you formerly found maddening. You might realize that when they say, “It would be nice if _____, ” they’re making a request, not speaking about an unattainable wish. Likewise, they may learn not to feel insulted if you raise a quizzical brow when they sit down with crackers.
Ask for help when you need it
If you’re the caretaker for someone with a disability, you already have one full-time job. No wonder you sometimes grow exhausted and curt from having to balance home and occupational responsibilities. Learn how to delegate and ask for help when you need it.
First, contact health insurance companies to explore your benefits. In 2020, Medicaid and Medicare began covering expanded at-home care services in the United States, and you may qualify for aid that officials previously denied.
Lean on extended family members, too. When one parent becomes more infirm as they age, it isn’t uncommon for one child to take on the primary responsibility of their care, but if your siblings don’t ask what they can do to help, ask them to pitch in their fair share. If nothing else, they can give you the occasional evening or weekend “off” to tend to self-care.
Set boundaries and practice self-care
You may need to set boundaries with your chronically ill loved one. You’re human, too, and they can’t expect you to be available 24 hours a day, seven days a week. If you don’t want them calling you at 2 a.m. when they can’t sleep, you need to communicate that lovingly. If driving them to an appointment three hours away will put a dent in your gas budget, ask them to chip in to refuel.
Sometimes, people with chronic illnesses can develop learned helplessness, not because they want to depend on others for everyday tasks, but out of the fear that they’ll injure themselves. For instance, someone with neurological issues that cause balance challenges might fall in public, embarrassing themselves. As a result, they might feel terrified to go to the grocery store, due to concerns about a similar spill. Gently encourage them and work closely with their medical team to help them rebuild their confidence.
You may need to be assertive—you can say, “I’ll go to the store for you, but I can’t fit it into my schedule today. If you can’t do it yourself, I understand, but you’ll have to wait until tomorrow.” When you express this sentiment with a kind tone, you empower the other person to try the activity independently, if they feel safe. If they don’t, you still protect your time and boundaries.
It doesn’t matter if you can’t pick up their eggs today because you planned a bubble bath—self-care isn’t selfish. It’s necessary to prevent burnout.
Show empathy without burning out your flame
When you love someone with a chronic condition, you feel their pain—and shouldering this burden can lead to burnout. Yet, by exercising compassionate empathy, communicating, asking for help and setting boundaries, you can manage your load as a caregiver without becoming overwhelmed by it.
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