How to Support Your Loved One Living with a Chronic Illness
It’s an emotional and sometimes confusing experience learning to support your loved one living with a chronic illness. With so much to learn over time, you need some strategies that you can count on as you’re making the transition on your journey. Here are 9 ways to support your chronically ill loved one starting today.
#1. Be a Good Listener
Living with a chronic illness comes with many challenges for your loved one and others in their inner circle. One of the most important things you can do when supporting your chronically ill loved one is to be a good listener. Your loved one needs to know that you hear and understand as they manage all that comes with their health condition.
Today’s society thrives on giving advice when people express their feelings, and sometimes that information is helpful. But when your loved one expresses their thoughts, feelings, concerns and needs about their chronic health condition, they need for you to put the advice aside and listen.
Signs of a Good Listener:
- Be present when they are speaking with you.
- Show your loved one that you hear them with nonverbal communication (nodding your head, facing your body towards them, show interest)
- Listen to understand – not to respond.
- Wait until they’re done talking before responding.
- Repeat back to them what you heard them say (“What I’m hearing you say is…”).
- Validate their feelings (“I can see that you’re really sad about this.”)
#2. Believe Your Loved One
Unfortunately, many people that live with a chronic illness express the feeling that they have to keep their emotions and experiences to themselves because many people, including medical professionals, don’t believe them.
They’re often told that they’re “making it up” or that their symptoms or experiences are “all in their head.” These statements are damaging, hurtful, and dismissive.
Your loved one needs you to take what they are saying seriously and believe them even if it is hard for you to understand. They need to know that you will back them up and support them when the details are hard to fathom or endure.
This is not the time to question the validity of what they’re saying. Instead, this is the time to ask how you can show up for them, supporting them in meeting their physical and emotional needs. Quite frankly, your chronically ill loved one chose to tell you what they’re going through because they need you. Even if they just want you to hear what they’re saying with no response.
It is a vulnerable experience for your loved one to open up about mental or physical health concerns. So take what they’re saying seriously and know that it’s no small feat for them to talk about it with you.
#3. Be Flexible with Unpredictable, Unplanned Health Concerns
One thing you can count on as a person is needing consistency. Research states that consistency reduces stress and improves your quality of daily living. Consistency helps you know what’s coming up so that you can plan accordingly. It also builds confidence and gives you something to look forward to.
However, your loved one’s chronic health condition may change that dynamic. The unpredictable and unexpected nature of living with a chronic health condition becomes your new norm, requiring you to be flexible and make necessary adjustments.
It becomes difficult making plans outside of your home, going on date nights, traveling on vacations or even inviting company over for dinner when your chronically ill loved one is suddenly not feeling well enough to do it.
You may also have your own ideas of how your personal plans will play out, but your loved one’s health could take a turn and require you to pivot and postpone your plans to make sure they are supported. Managing your social life when your loved one has a chronic illness may be challenging and overwhelming, but it’s not impossible.
Understand that your loved one may have every intention of following through with commitments they have made, but their chronic illness makes it harder for them to do that consistently. They also do not want to feel like a burden to you when you need to make changes in your schedule.
A way to support them is to be flexible when this happens.
How to Be Flexible with Your Chronically Ill Loved One
- Show your loved one grace and compassion if plans need to be canceled.
- Let them know that it’s OK.
- Reassure them that they are more important than your plans (no matter how disappointed you feel).
- Offer your loved one an alternative plan, if possible.
- Have a Plan A and B to support your flexible planning moving forward.
#4. Learn About Your Loved One’s Chronic Condition
Once your loved one receives a chronic illness diagnosis, the both of you have a lot of information to take in. From their symptoms, to future outcomes, and tips to manage their chronic condition, the information that you’re receiving comes over time spanning days, weeks and even years.
Many people living with a chronic illness express feeling frustrated when their loved ones expect them to educate everyone about their health condition. Do not rely on your chronically ill loved one to be the sole source of information about their illness. Now is the time for you to show up for them by taking the initiative to learn about their health condition in your own time.
There are plenty of books, podcasts and published articles out there to inform you about their specific chronic health conditions, if available. Here are some other chronic illness resources to get you started.
Benefits of Learning About Your Loved One’s Chronic Illness
- Your loved one is able to focus on managing their health condition.
- You learn more information.
- You are more likely to respond with compassion towards your loved one when you have more insight of what their experiences are like.
- Learning that your loved one’s symptoms are not always visible.
- You know the best, specific questions to ask when checking on your loved one.
- Noticing the symptoms gives you more information on how you can help them.
- Your loved one feels more supported, seen and understood by you.
#5. Make a Mental and Physical Health Plan to Manage their Chronic Condition
Once you have learned more about your loved one’s chronic health condition, this is the perfect opportunity to make a mental and physical health plan together on how to move forward.
As a chronic illness therapist, I am a full believer in addressing their chronic health needs from a biological, psychological and social lens (the biopsychosocial model for chronic disease). In fact, it’s been proven that this is a highly recommended approach to treating chronic health conditions, because it puts the needs of your loved one first.
So this means that your next step is to consider how you can support them emotionally and socially after talking with their doctor and getting treatment recommendations for their biological symptoms (i.e., medication management, time to recover, dietary changes).
Why Mental Health Supports Living with a Chronic Illness
Chronic health conditions have a direct affect on your loved one’s mental health. Heightened symptoms and the need to make life adjustments when living with a chronic illness bring on a wave of emotions. What’s important to know is that your loved one’s feelings are valid. They’re literally grieving their health and other areas of their life out of their control.
But if not careful, the intensity of their emotions can also amplify their health symptoms. Having a mental health plan does not erase their feelings (because those need to be expressed and felt). Instead, it helps them promote emotional balance or relief as they ride the wave to recover.
Mental health plans guide your loved one in coping with what’s out of their control more effectively, and you are a crucial part of how that happens.
Things to Consider When Making a Health Plan with Your Loved One
- Discuss both mental and physical health needs with your chronically ill loved one.
- Include recommendations from their medical provider.
- Clearly list all provider names, phone numbers, practice addresses, and online portal log-in information so that you can effectively reach out if needed.
- Make an appointment with a chronic illness therapist to help you and your loved one manage the changes that come when living with a chronic illness. Therapists offer a range of services, including individual, family and group therapy.
- Make a plan for how to respond if your loved one is experiencing a medical emergency. (Based on their condition, what are signs of an emergency?)
- Have all medical supplies stocked and ready to use as instructed by your medical provider (i.e., heating pad, blood pressure cuff, blood glucose meter, medication, etc.).
- List all your loved one’s emotional coping strategies needed to keep their mood steady when in a chronic illness flare, keeping those materials in an area they can easily get to them (i.e., list on phone, meditation app, coping cards, kit by the bed, etc).
- Consider if you or your chronically ill loved one have the option to take medical leave of absence if needed.
- Include names and contact information of people who your chronically ill loved one would like to have around or be notified in the event a medical event occurs.
- Keep a copy of the plan somewhere that you and others can easily access it.
#6. Accompany Your Chronically Ill Loved one to Medical Appointments
Medical appointments are becoming a part of your new norm as your loved one is living with their chronic health condition. From their general practitioner to specialists and other outpatient appointments, they are likely seeing doctors more often than other people around you. Accepting this as a new norm is challenging but can help you be supportive of what your loved one needs.
Many chronically ill people report experiencing medical appointment anxiety. There are many things that contribute to those nerves, and unfortunately can be a reason that some people postpone or opt out of attending the appointments at all.
Your loved one may have poor past experiences with their doctors (i.e., medical gaslighting and feeling misunderstood), making it really difficult for them to feel confident during future appointments. Accompanying your loved one to a medical appointment can actually be a major way to show up for them.
As a chronic illness therapist, I often hear how relieving it is for those living with chronic health conditions to have a supportive loved one with them in the medical appointment. I’ve also experienced this firsthand when my husband expressed his observations to my doctor in my own appointments. His presence and active participation in the appointment opened doors for more conversations between us, helping me feel supported managing my Relapsing Remitting Multiple Sclerosis.
You can do the same for your loved one if they are open to it.
How to Support Your Chronically Ill Loved One in Medical Appointments
- Ask if they’d like you to come along. Here’s an example of how to ask: “I know you have your doctor appointment coming up next Monday. Would you like me to come with you?”
- Confirm your role in the appointment with your loved one before the appointment. Do they want you to be a gentle, quiet presence? Should you wait in the car or in the waiting room? Are they open to you making observations or asking questions during the appointment?
- Take notes during the appointment. Your loved one may already have a list of questions or symptoms. Taking notes helps you advocate for them and explore next steps in their treatment with them.
Your presence at the appointment shows them that you have their back regardless of the appointment outcome. It reassures them that you will be there to hear it and manage it with them. And even if you don’t get to attend the medical appointment, you can still show up for them afterwards and be the relief and support they need.
#7. Gently Communicate Your Needs with Your Loved One
Your loved one has specific needs that are a high priority when living with a chronic illness. But what about you?
It’s not uncommon for you to feel like your needs go to the bottom of the priority list when supporting your chronically ill loved one. However, your needs do not stop just because your loved one is diagnosed with a chronic health condition. After all, you’re human as well.
I’m a firm believer that chronic illnesses are not an individual matter. It’s also a family and community experience.
There are times when your loved one may not be as present as you’d like them to be when balancing life responsibilities or simply focusing on their recovery. This is one of the top reasons that couples and loved ones of a chronically ill person can experience conflict. But this does not mean your needs don’t matter to them.
Try not to assume that your loved one is incapable of meeting your needs when they have a chronic health condition. It’s perfectly acceptable to ask them if they are in a place to meet that need for you right now. Let them confirm where they are and what’s doable for them right now, then move forward to meet your needs in the best way possible (even if it’s not the way that either of you had planned).
#8. Learn New Ways to Take Care of Yourself
Whether you’re supporting another adult or you’re the parent of a chronically ill child, finding ways to take care of yourself keeps you going, and focusing on building your own village is absolutely necessary.
As mentioned, before, chronic conditions are not an individual matter; it is a family and community experience. Your own experiences are valid and deserve to be heard and worked through. Focusing on yourself is one key way to do that.
Think about it.
It is an emotional experience watching your loved one live with a chronic health condition with limited answers and no cure. It’s scary not knowing how your loved ones are going to feel on a given day or moment. And the physical toll it can take on your body can make it more challenging to meet your own needs. What do you do?
Ways to Take Care of Yourself While Supporting Your Chronically Ill Loved One
- Maintain a consistent routine (including sleep schedule, if possible)
- Stay hydrated.
- Take time to engage in physical activities (i.e., stretching, going for a walk).
- Plan time with loved ones (in or outside of the home)
- Talk with a mental health professional to cope with the emotions that come up.
- Participate in a support group for loved ones of those living with a chronic illness.
- Ask for help from others.
- Express your feelings in a journal.
- Participate in a hobby that fulfills you.
- Follow your own health plan, including scheduling/attending your medical appointments.
#9. Offer to Help Your Loved One
There will be days when your loved one is experiencing a range of sadness, worry or more intense symptoms relating to the health condition. You might notice that some days are harder for them to accomplish things than usual before they do.
If you have a chronically ill child or teenager, it may also be difficult to determine whether their change in behavior is because they’re struggling with a health condition or a result of them “being a teenager.”
Tell them that you notice things are more difficult at the moment, offering to help them in any way that you can. Here are some chronic illness management tips that can help them have the most good days with a chronic illness. Be mindful that your loved one may decline the help, and that’s perfectly fine. No matter what, there’s nothing wrong with asking in good faith and showing your support.
Whether you’re helping them with completing tasks on days where symptoms are more elevated (chronic illness flare up), or you’re being more present with them by simply listening, these are the moments where they need you the most. So make the observation and be prepared to move on it as needed.
Now that you’re aware of ways to support your loved one living with a chronic illness, here are some signs that they are feeling unsupported.
Next Steps for Chronic Illness Support
I’m Alicia Dorn – a Chronic Illness Therapist. I help teens, adults and their families manage the emotional toll that living with a chronic illness can bring. Therapy is a powerful tool that can help you cope with your loved one’s chronic illness in a safe space.
Although the journey with a chronic illness is hard, therapy can make it more bearable by having the hard, necessary conversations, increasing your confidence, relieving your stress and talking with someone who understands.
You can schedule your first appointment with me by booking a free 15-minute consultation call.