How to Support Someone With Chronic Illness: The Basics
Managing a chronic illness is undeniably challenging. But these illnesses also have an impact on the people around them.
Are you close to a loved one who’s struggling with an invisible, relapsing condition? It’s hard to watch someone you care about suffer.
Maybe you want to know how to support someone with chronic illness compassionately and helpfully (because no one teaches us this stuff!).
If your family member, spouse, or friend is one of the 129 million Americans with a chronic illness, you have the power to make a major difference in their life.
Ready to learn how to support someone with chronic illness? Read on to discover the foundations of caring for someone you love, from educating yourself to effective communication strategies, practical daily living tips, and more.
Understanding The Supporter & Caregiver Roles
First, let’s talk about what it means to be a caregiver and supporter.
What is a Caregiver?
A caregiver provides care to an individual who has difficulty managing their life independently.
Caregivers often offer daily personal care assistance and help with activities for someone living with a chronic condition, such as cancer, ME/CFS, long COVID, fibromyalgia, dementia, depression, diabetes, stroke, and many other illnesses.
Not sure if you’re considered a “caregiver”? Ask yourself if you help someone with any of the following:
Personal hygiene assistance
Transportation to appointments
Medical condition monitoring
Actively listening and providing social connection to prevent loneliness
Getting in and out of beds or chairs
Getting dressed, bathed, showered
Managing finances
Completing housework
Grocery shopping
Advocating for them with providers
Managing medications
If yes, you’re a caregiver. This is a beautiful and worthy role to take on.
As former First Lady Rosalynn Carter said,
“There are only four kinds of people in this world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers. Caregiving is universal.”
A Word on Caregiver Burnout
A quick note on caregiving: while a noble and compassionate endeavor, caregivers are at risk of experiencing caregiver burnout syndrome.
The Cleveland Clinic defines caregiver burnout as “a state of physical, emotional, and mental exhaustion that happens when you’re taking care of someone else.”
Signs of caregiver burnout:
Fatigue
Anxiety
Depression
Withdrawal from loved ones
Feelings of hopelessness
Grief for a friend, spouse, or partner they lost
More frequent illness
Frustration, irritability, and anger
Decreased sleep quality
What’s the best way to avoid this? Be preemptive in taking care of yourself. Seek counseling or similar mental health support, join a support group network, and ask for help before you hit a breaking point.
Primary caregivers can also consider respite care for a restorative break.
Whether you’re a primary caregiver or provide “part-time” social and emotional support as a friend, your words, empathy, time, and practical assistance can help keep their symptoms at bay and improve their quality of life.
How to Support Someone with Chronic Illness: 3 Keys to Compassionate (& Practical) Care
It can be painful to watch someone you love struggle or suffer from a chronic illness. As a friend, family member, colleague, or neighbor, you wish you could do more for them, or take their pain away.
It’s natural to want to help, especially if you’re a deeply caring or empathetic person. The good news is that you have more impact than you realize.
But you also have to be aware of the potential pitfalls of taking on the caregiver or supporter role.
In this next section, I’ll prepare you for the challenges, provide you with powerful support strategies, and share insights based on my own experience living with ME/CFS.
Educate & Prepare Yourself
The first step in supporting someone with chronic illness is to learn about their condition.
Understanding the specific chronic illness your loved one is facing is a key piece of the puzzle. Without this knowledge, you’ll be unable to provide truly informed support.
First, start with the individual. How does the person with this illness describe it? What analogies and adjectives do they use?
Examples like Christine Miserandino’s “spoon theory” or my Cinderella’s glass slipper metaphor for ME/CFS can help you understand life with these complex conditions.
Here are further steps to guide your education:
Research the Basics
Seek out reliable sources to study up on the condition.
These are good sources to start with:
Centers for Disease Control and Prevention (CDC) | Chronic Disease
National or state organizations for their specific chronic illness
These resources offer comprehensive info on symptoms, treatments, and the overall impact of a condition on someone’s quality of life.
Still unsure where to begin? Type “[name of illness] information” into Google, and you’ll find a host of guides and articles to browse.
Know Their Rights & Stay in the Loop
Are you aware of the legal rights and accommodations available to your loved one? If not, you might both be missing vital information that could significantly improve their well-being.
Understand the legal framework.
The Americans with Disabilities Act (ADA) provides a foundation for understanding their rights in workplace and education settings. This makes it a good place to learn about the fundamentals. Read over the basics to familiarize yourself.
If you want a more in-depth look at work accommodations, insurance, and healthcare, explore the Job Accommodation Network (JAN) and other great organizations like the Patient Advocate Foundation.
Now that you’re well-informed about your loved one’s condition and their legal rights, you are better prepared to be an effective supporter, caregiver, and advocate.
2. Practice Good Communication & Active Listening
Establishing trust and honesty with someone you care about is the foundation upon which everything else is built.
This is especially true when that someone has a chronic illness. Let’s get into why that is, and practical strategies for communicating clearly with each other so you can build that trust and honesty.
The Importance of Open Communication
As a supporter or caregiver, being a good listener and validating their feelings can create a safe space for them to express their needs and concerns.
Here are some strategies to foster open communication:
Create a Safe Environment: Make sure your loved one feels comfortable sharing their thoughts and feelings. Let them know that you are there to listen without judgment.
Encourage Openness: Start conversations by asking open-ended questions about their current understanding of their illness and their needs. Make it clear that you want to be supportive, and are there to listen and help in any way you can.
Be Honest and Direct: Share your own observations and concerns gently. For example, you might say, "I've noticed you seem more tired lately. Why don’t we do XYZ instead?" The person with the illness will appreciate you taking the lead in proposing solutions or alternatives.
Discussing Hard Topics
If you want to truly support someone who’s struggling with a condition, consider being open to more sensitive or uncomfortable conversations about their illness.
Here are some tips to help you engage in more difficult discussions:
Choose the Right Time and Place: Ensure you have privacy and enough time to talk without interruptions. Pick a time of day and location where your loved one feels relaxed and open.
Use “I” Statements: Focus on your own feelings and observations rather than making assumptions or judgments. This helps you express your experiences without sounding accusatory.
Practice Active Listening: Share important points about your observations and ask open-ended questions to understand their needs better. Then, stop and listen. Show that you are engaged by nodding, making eye contact, and using affirming phrases like, "I understand."
Clarify and Summarize: Make sure to clarify any points that might be confusing. Summarize what your loved one has shared to show that you understand their perspective and are paying attention.
Ask How You Can Help: Rather than saying, "Let me know if you need anything," be specific in offering help. Ask if there are particular tasks you can take on or if there are specific ways you can support them.
Invite Ongoing Conversations: Let your loved one know you’re open to discussing their condition and needs at any time. Encourage them to follow up with you later if they think of more ways you can help.
Open communication and sensitivity toward discussing difficult topics will forge a stronger relationship between you. Remember, your role as a supporter or caregiver is to listen, validate, and provide practical assistance.
3. Practical Daily Living Assistance
Supporting someone with chronic pain or another chronic condition can go beyond emotional support. Practical help with daily life is also invaluable.
Try these strategies to help make daily life more manageable for them:
Take Initiative
The burden is often placed on the person with the illness to ask for what they need or decide when enough is enough energy expenditure.
If you want to help them, be specific rather than making open-ended offers.
This approach shows that you are proactive and genuinely willing to be their ally.
Social Plans
Chronic illnesses can make social interactions challenging because of overstimulation and fatigue.
Help your friend or family member by planning low-stress activities, taking their energy levels into consideration. For example, if you know long weekend trips wipe them out, arrange for them to join you for just a half-day.
You can also offer to manage RSVPs, alternative rides home, or plan gatherings in quiet, comfortable environments. Inviting friends to come by to start a movie can be a fun option too.
Specific Help
Instead of saying, "Let me know if you need anything," offer concrete assistance. For example, "I can do the grocery shopping this week," or "Would it help if I picked up your prescription?"
This removes the burden of having to ask for help, which is often challenging and guilt-inducing for many people with chronic conditions.
Daily Stimuli
Be mindful of the amount of stimuli in the environments your loved one spends time in. Can the bright overhead lights be reduced, or can the TV volume or music levels be turned down?
Even scrolling too fast through pictures or videos you want to show them can be draining or overstimulating. Being thoughtful about creating a more soothing environment goes a long way.
Set Contingency Plans
Preparing for the unpredictable nature of chronic illness flare-ups will help reduce stress. Bad days and good days will come, so it’s important to factor that into the daily living equation.
Prepare for bad days by having plans in place for when symptoms worsen. Do they have a stock of easy-to-prepare meals on hand? Can they access all their necessary medications? Is there a comfortable rest area available at home?
And always have a backup plan, especially for social events and daily activities. Maybe there is a quiet room available for a rest during gatherings. Or maybe you can set flexible plans that can be adjusted based on how they feel that day.
Manage Chores and Daily Tasks
If you’re a caregiver to a spouse, sharing the burden of household chores and daily tasks can significantly alleviate stress for your partner.
Sharing the Load: Divide household chores, taking into account their energy levels and physical capabilities. Regularly check in to see if the arrangement is still working for them and adjust as needed.
Introducing Automated Tools: Utilize technology to simplify tasks. This can include using a robot vacuum, setting up automatic bill payments, or using grocery delivery services. These tools can save energy for more critical activities.
Empower Their Independence
While offering practical assistance goes a long way, don’t forget to encourage their independence and decision-making abilities.
Taking away someone’s autonomy can take a major blow to their self-esteem, and even contribute to mental health issues like depression.
But how can you empower them to retain their independence?
Involve them in conversations and important decisions.
Respect their preferences.
Encourage them to take the lead when possible.
Actively listen so they know their opinion matters.
Provide them with educational materials, symptom and medication-tracking apps, and other resources to help them manage their illness and feel more in control of their condition.
By taking these practical steps, you can alleviate some of the daily struggles faced by your loved one with a chronic illness.
Final Thoughts: You Can Make a Difference to Someone with Chronic Illness
Supporting a loved one with a chronic illness requires empathy, patience, and proactive effort. Your involvement can significantly enhance their quality of life.
Educate yourself about their condition to provide informed support, practice good communication to foster trust, and offer practical assistance to ease their daily challenges.
Remember: taking care of yourself is also crucial to avoid burnout. Consider joining a caregiver support group.
The supporting process also requires a healthy dose of empathy and flexibility, as chronic conditions are in a state of flux. Your understanding can serve as a steady rock in a hurricane of unpredictability.
For more insights, request info about my keynote seminar on effectively supporting patients with invisible illnesses. And explore my ME/CFS advocacy platform here CarolineNiederman.com. I share new resources every month.
Your actions can inspire compassionate and informed support for those in need. Thank you for your dedication.
