Imagine throwing a stone into some water. The stone doesn’t just affect the water at the point of impact – the ripples are far reaching.
Living with someone with chronic pain means that you’re right in the splash zone. You’re witnessing the impact of the chronic pain on the person in pain, and being personally affected by it at the same time.
The severity of the impact of will vary according to how much the pain affects your loved one’s ability to do daily activities, how much it affects their mental health, their financial situation, social life etc.
When you live with someone with chronic pain, however it affects them, it will be affecting you in a variety of ways too.
Many families are impacted financially, socially, emotionally and psychologically. It all takes its toll. Family members and spouses often take on new roles in the household, where the focus is around taking care of their loved one in pain.
A lot of the information for those living with someone with chronic pain is focused around how to support the person with pain, how to understand them, and how to be of help to them. This is really helpful to know.
And then there’s you. You might become so consumed by the situation that you can lose sight of yourself in it all.
If you are living with someone with severe chronic pain, here are some tips for taking care of your own self-care.
1. Work out your barriers to self-care
Chances are you already know how important it is to take care of your own health and wellbeing, whether you’re a caregiver or not. It’s likely that you’re already aware of many things you can do for yourself in terms of self-care, yet you may not be actually doing those things.
If this applies to you (as it does to many), think about why you might not be doing some of these things. Think about what is stopping you from taking care of yourself – what are your barriers to self-care? And how can you get around those barriers?
For example, perhaps you believe that self-care is selfish. Maybe you think that you must always put the needs of others before your own needs. It could even be that deep down you don’t believe you’re deserving of care. Perhaps you think others will judge you for spending time on yourself, while your loved one is at home in pain.
On the other hand, there might be more practical factors that you feel limit your ability for self-care. Try to recognize what those barriers are for you. When we acknowledge these things, when we work out what the problem is, we can often find ways around the problems, whether that’s a different way of thinking, or something more practical.
2. Take care of yourself for you
Caregivers are often reminded to take good care of themselves, so that they are more able manage to take care of the person they’re caring for. And to be fair, that is a good reason.
But how would it be to take good care of yourself for no other reason than keeping yourself well?
So much of the focus of caregivers is on the person they’re caring for. It may seem obvious, but your own self-care doesn’t need to serve any other purpose than to care for yourself.
3. Write yourself into your schedule
You may be hard pressed to find time for yourself. Perhaps you’re the only person in the household now earning an income. Maybe you’ve taken on more household tasks, or childcare duties.
“I don’t have the time.”
It could be that you make plans to do something for yourself, and then something comes along that seems like a higher priority, which means you don’t follow through on your original intention.
If this happens to you, remind myself that you are high priority. If we’ve been brought up to believe we must put others’ needs before our own, everything else that comes along is going to seem like a higher priority.
Self-care isn’t selfish. Make an appointment with yourself in your schedule, write it into your calendar or diary just as you would any other scheduled appointment. Don’t just pencil it in, mark out that space and make it your highest priority for that scheduled period of time.
4. Spend time with people outside of your household
Living with someone with chronic pain can be isolating. Perhaps there have been times you’ve been invited to an event, and your loved one might be having a pain flare up, so you don’t attend. Others may stop inviting you along to gatherings – perhaps just assuming you won’t be able to make it.
Friends and family tend to rally round to offer support in moments of crisis but often fall away afterwards, back to their own routines.
Try your best to stay connected with people outside of your household, whether it’s family, friends, neighbors, or members of your faith community.
“I don’t want to leave them feeling abandoned.”
Even when your loved one doesn’t feel up to attending events that you’ve been invited to, you could still go along. It’s ok not to do everything together.
Maybe you’re worried about what other people might think of you for having fun with others while your loved one is suffering at home.
But honestly, most reasonable people will just be happy to see you, and if the people in your social circle are judgemental in that way, they’re probably not worth your time anyway.
If the invitations have stopped, make some of your own, or encourage visitors to come and spend time with you and your loved one together. Social isolation can really impact mental health.
5. Find an outlet for difficult feelings
Let’s face it – sometimes we experience all sorts of intense feelings about chronic pain, whether it’s happening to you or someone you live with. It’s not uncommon to struggle with emotions like frustration, a sense of powerlessness, guilt, shame, anger, sadness or resentment.
It can feel like you’re carrying the weight of those emotions around like a heavy backpack, and if you can set it down somewhere, it feels like the weight has been offloaded.
Take the time to check in with yourself about how you’re feeling, and find ways to safely express those emotions. You can be as creative as you like with how you express yourself.
I like to write poetry as a safe way to express difficult feelings. Others might prefer journaling, running, playing an instrument, or painting, for example.
The method isn’t really important. What matters is finding a way to set the emotional backpack down and emptying some of the weight out, whenever you need to.
6. Find ways to have undisturbed sleep
Many people with chronic pain struggle to sleep, and if you’re sharing a bed with someone who often suffers with pain during the night, you could end up trying to drag yourself through the day with little energy or enthusiasm.
Sometimes the person with chronic pain can find that the movements their spouse makes during sleep to cause them further discomfort.
Spouses might choose to sleep in separate beds to overcome these problems, and if that’s the right thing for you and your loved one, then go ahead and plan that change. Don’t pay heed to what you both think you should be doing, just because it’s the ‘norm’.
Oftentimes though, couples do enjoy and want to keep the intimacy and sense of togetherness that comes from sleeping next to each other, despite sleep disturbances due to pain.
In that case, a different kind of mattress might offer a solution. There are some good options for mattresses that offer motion isolation to minimise disturbance levels through the night.
If you’re having issues that prevent you from sleeping well during the night and these kinds of changes aren’t possible right now, try to allow yourself some nap time when you can.
Lack of good rejuvenating sleep can make everything feel more like an uphill struggle.
7. Build yourself a support team
Whether it’s a team of family members that you can delegate tasks to, a team of professionals who can support and advise, or an informal network of friends you can count on, it’s important not to feel alone in supporting someone with severe chronic pain.
If your loved one needs a lot of help with daily living activities, it might be worth looking into adult day care services and other forms of respite care, so that you can have some time for yourself.
Consider having a counselor on your team, in order to have a non-judgemental space where you can get things off your chest and to help you find ways forward with any specific difficulties or challenges.
If you find it difficult to ask for help, that’s ok. Though don’t let your feelings of discomfort get in the way of doing so. If someone isn’t able to lend a hand at any given time, they can always say so, and there’s no harm done.
8. Connect with others who understand
Finding a support group for caregivers can be a great source of understanding and knowledge sharing.
Others who are living with someone with severe chronic pain will understand what you’re going through, share similar feelings about it and will have learned a variety of strategies for coping that they can share.
You can either attend support groups for caregivers in person or join an online group, on social media platforms or specialist forums on the web.
9. Find an activity that allows you to be in the moment
Throughout the day, we can tend to spend a lot of time thinking ahead, planning what we need to do for that day, week, or month.
We might also spend a lot of time ruminating over things that have already happened.
We’re so busy doing – and while we’re busy doing, we’re also busy planning, problem solving or going through things that have happened in our minds.
It can be so beneficial to put aside time where we can just be.
We can just be while we’re doing many things. But oftentimes, people struggle to switch their focus to being in the moment.
Some use meditation for this. You could also find that certain hobbies or pass times help you to be more in the moment, whether it’s crafting, music, art, sport or being in nature.
Find whatever practice works for you, and include it in your self-care toolbox.
Conclusion
These are just a few of many ways in which you can focus on self-care when living with someone with severe chronic pain.
You needn’t necessarily do things by yourself – you could invite your loved one to join you in things they are able to do if they enjoy those activities too.
Couples and families can get creative in finding ways to involve a loved one with severe chronic pain in activities that support wellness.
It’s really worthwhile overcoming any personal barriers to self-care and making it a regular part of your routine.
Because hey…
You’re worth caring for!
If you found this article interesting, you might like related posts I’ve written on the topic of chronic pain and relationships. I cover issues such as how chronic pain and relationships influence each other, and how to help someone with chronic pain. I also look at the effect of chronic pain on spouses and family in my posts on divorce and chronic pain and having a parent with chronic pain.