Caring for someone with a chronic illness isn’t something that comes with a manual. The emotional toll it has on everyone involved is intense, and you will feel drained, misunderstood, guilty, frustrated and overwhelmed at some point. Although this is a teething process, there are certain things you can do right away as a caregiver to make this process smoother.
Caring for someone with a chronic illness in a healthy way includes:
- Accepting that you are not in control of their wellbeing;
- Learning about their condition and validating their pain;
- Knowing when and how to give each other space;
- Taking care of yourself, seeking help and using assistive tools; and
- Establishing your roles.
In this article, we break down these points into 11 clear ways to improve how you care for someone with a chronic illness. I know it may seem overwhelming right now, but please know you are not on your own. Before we start, here’s something you need to hear:
You are doing GREAT!
Accept That You Are Not in Control
I know you’ve thought about it. You’ve wished for a silver bullet to heal your loved one.
You want them to be well, and you want a tangible solution to get them there. When this isn’t possible – you begin to feel guilty or helpless that you can’t be the one to fix their suffering.
You have done every google search possible.
You’ve spoken to a million doctors.
You’re always looking for treatments that could be more effective.
In your mind, you feel responsible for their recovery, and this is a huge burden to put on yourself. And, unfortunately, it’s not healthy either.
Chronic illnesses are extremely complex and often need to be managed throughout someone’s life.
If treatments, therapies, medication, etc., are not guaranteed to help – you need to approach everything you do with an open and fair mind.
When something doesn’t work – it breaks our hearts to see the disappointment in your eyes too.
I’m not asking you to be negative here – just pragmatic in your approach. Let go of any unrealistic expectations you put on yourself and be ready to embrace the ups and downs of this journey.
As a loved one and caregiver, the best you can do is help someone with a chronic illness make the most out of their daily life. Ensure that their quality of life is better with your care.
Have realistic expectations for your loved one’s health and progress. Be realistic in what you expect from yourself as a caregiver.
Learn About Their Condition (Assumptions Don't Help)
One of the things that can cause a lot of friction when trying to help someone with a chronic illness is that it can feel impossible to relate to them at times.
The concept of pain or suffering that never goes away is really hard to get your head around. Never mind the obstacles you face living in a world built for able-bodied people.
What’s even more mind-boggling is that many chronic illnesses don’t change your outward appearance. You still “look” fine to everyone around you. So, obviously, you must feel okay too, right?
Assumptions like these cause serious divides between a caretaker and who they’re helping. Especially since one of the biggest issues anyone with a chronic illness faces is feeling misunderstood or unheard.
So, the more you can put yourself in the shoes of the person you’re helping – your ability to care for them improves, and so does your emotional bond.
Here are some points to help you out:
- When you visit a specialist, ask them as many questions as you can.
- When you want to help, ask if you feel your suggestion would be helpful before just going for it.
- Read up on as many studies and reliable medical articles as possible. Do NOT get into an internet search wormhole without verifying your sources.
- Try an empathy activity: use a wheelchair, walking aid, brace or anything else that your loved one with a chronic illness may use. Keep it up for a whole day and use what you’ve learnt to make their lives easier.
- Most importantly, just talk to your loved one who’s suffering. Ask them as many questions as you can without ever making assumptions.
Be Present, Yet Give Them The Space They Need
It sounds crazy, but it’s true: Be with your loved one but remember to give them space when they need it.
Having a chronic illness is socially frustrating for a few reasons:
- You crave your loved one’s simple presence and company more than interaction sometimes. You’re just too tired to be social.
- You need a lot of space to process your emotions, yet it’s hard to go through it all alone.
- You feel disconnected from the rest of the world – which often leaves you feeling lonely and misunderstood.
At any given point, someone with a chronic illness could be at a different stage of the grieving process – denial, anger, bargaining, depression and acceptance. Sometimes they’re all thrown in there at once.
It’s a lot to process all at once, and your needs vary depending on where they’re at.
So if you’re caring for someone with a chronic illness, the best gift you can give is your patience and time.
Being present to watch movies, relax, stay home or even do arts and crafts together is appreciated more than you could ever imagine.
But, often, anyone with a chronic illness also just needs a lot of time to rest, reflect and regather their strength (emotional and physical).
Sleep is critical, so please know that when you give them space to rest, you’re helping them manage their health too.
If you’re learning about this process, I recommend giving this article a read to get in the mind of someone with a chronic illness: 30 Things Chronic Pain Sufferers Want You to Know
Validate Their Pain – Don't Downplay It
If you’re caring for someone who has a chronic illness, one of the most important is validating their pain and suffering.
As I’ve already mentioned, most chronic illnesses are invisible and are often met with remarks like “you don’t look sick to me,” or “chin up, it can’t be that bad.”
None of these comments is helpful.
All they do is downplay or disregard what that person is going through – making them feel even more alone.
Although you will never truly understand how that person is feeling – you can acknowledge that you see how hard they are fighting.
As a caretaker, here are some ways to validate someone’s pain:
- Ask them if it’s a good or bad day. Given how they feel can change by the hour – knowing this can dramatically help how you care for them.
(I don’t recommend asking them how they are feeling every five minutes, though – it’s too much.)
- Know their pain-needs. When a flare is on the way or their pain has worsened – come prepared with things that can assist.
Remember that open communication will let you take care of this quickly.
If you’re want to know more on how to prepare for flares, I have the perfect list for you here: The Ultimate Flare Survival Kit for Chronic Illness
- Keep comfort top of mind.
If the person you’re caring for suffers from chronic pain, daily discomfort is inevitable. Almost anything could strain them – from sitting on the wrong chair to holding a pen for too long.
Luckily, it’s never been easier to find assistive devices, no matter what disability you have.
So do you research and make sure the home allows someone with a chronic illness to feel enabled by their environment. (We discuss what this entails further down.)
Work Through Your Frustrations
Caring for someone is a hard job and a huge responsibility.
There are a million things to consider every day, lots to juggle, and a few curveballs are always thrown when you least expect it.
It can feel hard on everyone involved, and that’s okay!
When my boyfriend and I start dating, I always told him to vent his frustrations out to me. We’re are in this together, and I want to know when his role as caretaker gets too much.
I appreciate that he opens up to me and tells me what’s bothering him and why. It doesn’t happen often, but at least we can work through it when it does.
It’s not meant with any harm or bad intent. And it’s certainly not there to start a competition of who feels more frustrated or who has more to deal with at that moment.
Shove those feelings aside for a second, and remember that everyone’s feelings are valid. By taking this approach, you will stop yourself from building resentment towards the person you’re caring for in the long run.
This leads me to the next crucial step…
Take Care of Yourself (Even If It's Hard)
You can’t pour from an empty cup!
As a caretaker, it’s easy to become an afterthought when so much of your life revolves around looking after someone else.
But this doesn’t mean it’s fair or right. You are also human and deserve to be cared for too.
Without ensuring that you are well first, it’s unlikely that you’ll be able to fulfil your role as a caretaker and give to others too.
Make time to do the things that are important to you to continue to fulfil your own life and happiness.
Ensure you’re looking after your health and being cared for in return too. Whether it’s having your nails done, going to the gym or getting a full body massage, just do it!
Just like expressing your frustrations, creating those boundaries around your needs will stop you from harbouring unnecessary resentment towards the person you’re looking after.
Seek Help When You Need It
Even with a lot of research and experience, you still need help from time to time. Taking on this role by yourself is far too much, and you need to be kinder to yourself if you’re in this position right now.
If you need help, you should not feel like it’s a bad thing to seek. You can always ask family or friends to help you - especially if medical bills are draining your finances.
Just remember that most people will be happy to help you in whatever way they can – but they can’t unless you let them know.
If family or friends are not an option, you can also ask for help from a medical professional who has more experience, skills and available time to give you.
Once you’re hiring someone to help you and not asking a loved one – you don’t have to worry as much about their availability.
In the beginning, you might feel overwhelmed by the need to do everything and make sure the person you’re caring for is alright. But in time, open up to help from others.
With a bit of experience, you will develop the critical skills needed to resolve most of the daily issues you face. You will also develop confidence when handling new situations going forward.
The more you know and feel comfortable with, the more information you can impart to someone trying to help you, making the experience more productive than destructive.
Talk About Your Roles (Setting Boundaries is Crucial)
We’ve spoken about the importance of venting your frustrations, taking care of yourself and seeking help when you need it – but how do you get yourself on the right track so that all of this is possible?
Boundaries are one of the most important things to implement for you and the person you’re caring for.
Without them, your needs will be disregarded, and you will not perform as well in the long run.
It’s a really good idea to sit down together and discuss what you expect from each other and why. Remember to include every aspect of what your loved one needs help with.
From there, you can start to discuss what you can do and what you may want someone else to help you with.
Having this conversation is also a great way to stop and be mindful about everything that’s going in your life and whether you’re coping with your tasks or not.
Remember that we all have limits, and it’s okay. Without them, we cannot pretend to lead healthy, balanced lives.
Discussing roles is also important for another reason: it helps you be prepared as a caregiver.
Creating a plan of action
There’s nothing like being in an emergency situation, and you have no clue what to do, where to start or how to go about resolving it.
It’s not a nice discussion, but it’s an important one to have as the caregiver.
You need to ask your loved one:
- What problems are currently arising?
- What services could be useful during this time?
- Which emergencies require hospitalisation?
- Which doctors should be on speed dial?
- What process should you take when they flare?
In case of emergency, remember that you need to:
- Identify the problem
- Find possible solutions
- See which of these solutions could work best
- Try the solution
- Evaluate the outcome
Keep Assistive Tools Handy
As you probably already know, being a caregiver to someone with a chronic illness means helping them fulfil daily tasks that they struggle with.
The intricacies and complexities of this work, especially when you are close to family or friends, are very challenging.
It’s not only a big sacrifice for you, but I can vouch for almost anyone out there with a chronic illness when I say: we really, really don’t want to need your help.
If we could do it ourselves – we would much rather have that.
It can feel humiliating and degrading when you need help going to the toilet, getting out of the shower or even tying your shoelaces. I’ve been through the worst of it, so I speak from experience.
That’s why using assistive tools isn’t only there to make your life easier as the caretaker; it’s also there to help enable the person you’re caring for.
There’s a process that includes:
- Looking at the issues your loved one is facing;
- Evaluating the exact areas in which they need help; and
- Tailoring solutions to fit that exact need.
Assistive devices such as a lift, hospital bed, shower chair, grab bar, portable commode, communicative devices and walking aids (walker, wheelchair, crutch) are all really important things to consider.
If your loved one enjoys cooking, for example, and finds it hard to cope in the kitchen, then this is the perfect article to help them out: 12 Energy-Saving Cooking Tips When You’re Chronically Ill
I have so much information on this topic with actual tailored suggestions that I know you’ll benefit from in my FREE 7-day programme.
So if you want to up your game, it might be a great idea to suggest this programme to your loved one as it’s specifically designed to help people who have a chronic illness before anyone else around them.
Not only does it provide ample research-driven advice, but it takes you through a step-by-step process in how to make it applicable to your own life.
You’ll also get a free medical binder when you start to record all your activities and document your progress. Click here to enrol now: 7 Days to Happiness Programme
Be Patient with Your Loved One
Patience isn’t only important for the person suffering from a chronic illness – it’s important for you too.
Taking care of someone with a chronic illness requires a lot of time, energy and repetitive actions.
On many days, you might feel as though you’re taking two steps forward and one step back. You want to help them improve, and I know you want to see results – but this is not a journey that transforms overnight.
But impulsive decisions, hot-headed reactions, and aggressive handling of any situation will not help it get better, faster.
If anything, losing your patience only makes you less mindful of your loved one's needs.
Just as you might preach that yoga, mindfulness, journaling and all these therapeutic activities for someone with a chronic illness – you’ll benefit from them greatly too.
These activities help you recentre your focus on what is important and what is the top priority. It will help you block out the negative thoughts and hone in on what counts.
Finally, it helps keep your loved one calmer and happier too. Staying calm as a caretaker will impact how much stress or anxiety the person you are caring for will feel.
Taking care of someone with a chronic illness is not easy, but there are ways to make it manageable and aid your shared relationship too.
Every person is different, and the same applies to chronic illness. We all experience it differently, and you cannot assume what works for one person will help another. The most important thing to do is really do your best to understand the specific person you’re helping as best you can.
Let go of your need to control the situation, be cognizant of what that person is going through, listen, be patient and validate their pain.
And if I can share any last words, here they are.
What to take away from being a caregiver:
- Take care of yourself by staying healthy.
- Set healthy boundaries as a caretaker.
- Surround yourself with humour and a focus on healing.
- Have realistic expectations – of yourself and your loved one.
- Finally, give yourself a break – you’re doing an AMAZING job.