According to stats, a staggering 71% of those of us who are caring for someone have our own physical or mental health conditions. Yet this hidden aspect of caring often goes woefully unnoticed.
“If one more person tells me to ‘look after myself’, I think I’ll scream”
We know, we know - it's hard, if not impossible, to look after our own health when we're caring. We've done our best (with the help of our awesome community) to share some ideas to combat this common challenge. It's a silent struggle for a lot of us. We may feel we could take better care of the person we look after if we could only be healthy. Or that our own health could improve if we only had some time to rest. It can feel like the buck stops with us and there’s little space for us to be unwell too.
"Being a carer is the most challenging job I’ve ever had . I constantly worry that I’ll get ill and then who’ll care for me!"
Whether it’s coping with a chronic condition, dealing with a temporary illness, or just navigating the huge stress of caring. It’s easy to minimise the impact this can have on both our own wellbeing and our ability to provide care for others.
Carers are often naturally compassionate people. But, however unnatural it might feel, it’s important to remember that our health matters too. Prioritising our own health is not selfish.
“We need to look after ourselves. We only have one body”
If we’re struggling to manage our own needs alongside those of the person we care for, know that we’re not alone. Support for both us, and them, is available.
Keep reading and we'll explore:
What type of health issues are carers suffering with
Let's start by taking a look at the various health issues that carers like us might be dealing with alongside our caring role:
Chronic physical conditions
If we have a chronic physical condition like arthritis, back problems, fibromyalgia, or mobility issues, tasks that need physical strength and stamina, such as lifting, bathing, or helping with movement, can be particularly tough. It's harder for us to provide hands-on care, and doing these physical tasks can worsen our condition.
“I was recently diagnosed with a fractured spine and keep asking my GP for help because looking after my loved one makes me want to scream in pain. All my GP does is offer painkillers that knock me out, which isn’t helpful as I have to be alert at all times.”
Acute illness
If we get hit with an illness like a bad cold, the flu, or even a nasty case of covid, it can leave us feeling super tired and unable to do much. Some carers might even experience lasting effects, such as long covid, or reduced lung capacity from chest infections, especially if we are not able to rest and recover properly.
“We are not allowed to be poorly. It really gets to you when you do everything for someone, but can’t have time to recover.”
Physical injury
If we get hurt or are in an accident, it can make it even harder for us to take care of someone, both temporarily and long-term. It can also affect our mental health, causing things like trauma or PTSD which we may not feel able to give ourselves time to address.
Mental health challenges
When it comes to mental health, issues like depression, anxiety, and chronic stress can really take a toll on us. It's tough to stay compassionate, patient, and set boundaries when we're feeling overwhelmed or emotionally drained. Sometimes, these struggles come from the demands of caring itself, which is physically and mentally exhausting.
“Caring is just relentless. There’s never a pause”
Chronic stress doesn't just affect our mental health - it can also cause physical problems like heart issues and autoimmune disorders. So it really is important to take care of our minds as well as our bodies.
Neurodiversity
We believe that neurodiversity is something to be celebrated, but we also know that for carers with ADHD, staying organised and focused can be a real challenge. It's hard to keep track of tasks and appointments, both for ourselves and the person we care for. Plus, managing medications and sticking to routines can feel overwhelming, making it tough to provide consistent care.
“Caring can be incredibly difficult with ADHD. I get so overwhelmed with the organisation that goes into the smallest things, that it leaves me exhausted.”
Meanwhile, if we're carers with ASD, we might struggle with sensory sensitivities. Disruptions to our routines or loud, stressful environments like hospitals can be really overwhelming for us.
Communicating our needs can be more challenging too. And if regulating our emotions is difficult, draining or upsetting carer interactions can be fraught with tension and have the potential to blow up.
Degenerative conditions
Degenerative conditions like dementia, Parkinson's disease, or multiple sclerosis (MS) can really affect our physical abilities, getting worse as time goes on. When we're grappling with one of these conditions ourselves, it can be incredibly challenging to provide care for someone else while our own health is on the decline. It can also stir up a lot of tricky emotions about who will care for them if we are no longer able to.
How does caring alongside our own healthcare needs impact us?
Taking care of others can sometimes mean we forget, or simply feel we just don’t have the time to look after ourselves. And this can make our own health issues worse. For instance, we might put off seeing the doctor when we're not feeling well, or skip things like exercise and healthy eating because we're too busy or stressed.
“Don't let yourself deprioritise your own personal care / ringing the GP for yourself, etc”
Neglecting our own health doesn't just affect us physically - it can really take a toll on our mental wellbeing too. It might make existing problems worse or even lead to new ones, like feeling completely overwhelmed and burnt out.
And it's not just our mental health that suffers. Ignoring our physical health issues can make them worse too. For example, if we have back problems and keep lifting and twisting without doing strengthening exercises or getting help from the right specialist, it can make things more painful in the long run.
Ultimately, not taking care of ourselves might feel like a selfless act, but it can have pretty serious consequences. Not only do we miss out on the care we deserve, but we might become unable to care for the person we're responsible for. Or put them in danger if our health deteriorates.
Plus, it can strain our relationship with the person we're caring for. We might understandably start to feel resentful because we're struggling with our own health and blame them when we can’t take the time we need to rest.
“I’m in pain most days and I’ve got endless physio and exercise sheets. I just feel like a pest asking the GP now so it’s easier not to see them. It’s got to the stage I can barely manage to fasten my husband’s shoes in a morning my hands are so painful.”
It's important to remember that looking after ourselves is a crucial piece of the caring puzzle - putting ourselves first sometimes is necessary for us to stay happy, healthy and be able to continue with our caring role. The old, put your oxygen mask on first, mindset.
Top tips for coping when we care for someone alongside our own healthcare needs
When things feel overwhelming, remember: it's always okay to ask for help. Here are some ways we can create space to care for ourselves, alongside looking after others:
Complete a carer’s assessment
A carer's assessment's main goal is to find pockets of help in our caring role that our council can provide for us. Even if we have done one previously, if our health situation has changed, so will our current needs, so it’s worth getting assessed again. From here, we can explore various support options available to us, from practical assistance, to financial support and emotional support services.
“Keep calling out your needs and do everything you can to be heard.”
Complete a care needs assessment
A care needs assessment, also known in some areas as a needs assessment, or a community care assessment or social care assessment in Scotland. It is a free process used to identify someone's individual needs for care and support. It can mean they receive additional services or direct payments to help them, and so take some of the pressure off us. It is also the first step in getting access to respite.
“They had to check what funding was available but contacted me back that afternoon. The outcome of the meeting was they can offer us a bedtime call for both of us. They also offered me a sit-in service for my partner to give me a break for two hours every Monday. This starts tomorrow and I cannot wait. What has surprised me is how quick things have been put in place.”
Look into options for respite
Securing funding for respite care can be tough in some places, but taking time away is crucial for our health and wellbeing. Even short breaks can make a big difference.
If we need emergency respite care, reaching out to social services or our local council is usually the way to go. They can give us information on available resources and help set up temporary care for the person we usually look after.
For planned time off, like needing surgery, it's smart to plan ahead and talk to our social services or care team. We have more advice on this in our section on emergency planning.
Reach out for support
Tell friends and family: Sometimes, simply opening up and talking about how we're feeling with our loved ones can help. Whether it's with friends, family, or colleagues, don’t hesitate to let others know how we are feeling, and when we could use some support. We might also want to consider talking to a professional who can help us navigate particularly complex feelings.
Delegate tasks: We don't have to handle everything on our own. Asking for help with tasks that feel overwhelming, like household chores or lifting heavy objects, can lighten the load. Reach out to friends, family, or consider hiring paid carers if it's within our budget. Building a strong support network can be a lifesaver. By widening our caring circle, we can broaden our support system and carve out time for our own needs.
Find local support: We could explore the local resources and support services available to carers. Even if we have limited friends or family or financial means, social services may offer practical support such as a care needs assessment, assistance with household chores or personal care for the person we're caring for.
“I’m disabled with limited mobility and my partner, who was my carer, has vascular dementia. I contacted the duty social worker as getting my partner ready for bed was a struggle for me. We had a meeting scheduled with her the next day.”
Prioritise our own health
Prioritising our own needs might feel strange at first, especially when we're used to being a superhero carer.
But it's important to remember that if we don't take care of ourselves, we might not be able to continue providing care, or we could put ourselves and our loved one at risk.
So, let's make sure we attend our GP appointments, make time for exercise, and address any health issues before they get worse. It's okay to take care of ourselves too.
“Apart from the tiredness of being a carer, I have fatigue associated with my rheumatoid arthritis, and also it was discovered from a routine blood test that I had low levels of vitamin b12. I now have injections every two months.”
If we're feeling tired or run-down, we can take small proactive steps like taking multivitamin supplements, stretching, resting, getting some sunlight each day, drinking enough water, and getting a health check-up, like a blood test to check our iron levels.
And to make sure we're consistently prioritising self-care, we could add a reward to our to-do list each day - a little act of self-care goes a long way.
“I have Iron deficiency anemia. I can tell when it's getting bad as I nod off as soon as I sit down. I try to get everyone outside for a walk everyday if possible. Regular bedtime and the same routine helps too.”
Set boundaries where we can
It's easy to fall into the trap of putting everyone else's needs before our own, which is why setting boundaries is so important. While we can struggle with feels of guilt if we don't try to do it all, constantly stretching ourselves too thin can really impact our health. Making us more susceptible to illness and worsening symptoms.
Even though it can feel really hard to have the conversation, it's crucial to set clear expectations and be realistic about what we can manage. By setting boundaries and making our own well-being a priority, we can work to avoid burnout or from getting more unwell ourselves.
Have an emergency plan
It's helpful to have a plan in case we're unable to provide care. Having an emergency plan can provide peace of mind knowing that there's a plan in place to keep things going for the person we care for should something happen to us. This plan should outline who will step in to provide care temporarily if we are unable to do so. For insights on emergency planning, check out our LIVE discussion on this topic. We also have a free template guide to download to help with the process.
We might also want to consider buying a medical alert system that can notify emergency services if we're unable to do so ourselves. These systems often include wearable devices or home-based units that can be activated in case of an emergency.
If we find ourselves really unwell or in the hospital without an emergency plan already in place, we can:
Contact adult social services: Reach out to adult social services and inform them of our situation. They may be able to provide temporary care services to assist the person we normally care for in our absence.
Inform hospital staff: On arrival at the hospital, make sure to inform the staff about our carer responsibilities and the need for temporary care for the person we normally care for. The hospital may have social workers or discharge planners who can help arrange temporary care arrangements.
Alert family, friends and neighbours: Reach out to our support network for assistance. They may be able to step in and provide temporary care or support until more permanent arrangements can be made.
If we’re preparing for a hospital stay we can:
Tell social services: If we know we're going to the hospital, it's important to tell adult social services about our situation and the person we usually care for. They can help arrange support while we're away, whether that’s someone to come to our home or a short-term care facility.
Talk to hospital staff: Let the hospital staff know about our caregiving responsibilities. They might have people who can help us figure out care options for the person we usually look after.
Arrange paid care: If we're able to pay for help, arranging for carers to come in during our hospital stay can provide peace of mind. This ensures that the person we usually look after receives the care they need while we're away.
Print and share our emergency plan: Make sure we have our emergency plan circulated if something goes wrong while we're in the hospital. It's important for both us and the person we usually care for to have someone to rely on in an emergency.
Stay organised
Try using tips and tricks to stay organised with carer tasks, appointments, and paperwork. This can help reduce stress and ensure nothing falls through the cracks. Our admin top tips for carers by carers is a helpful article for advice from other carers.
Getting our own health planner can help too. There’s a particularly brilliant ADHD-specific planner we can download and print on Etsy, that’s designed specifically to help neurodivergent people to stay organised. Having a separate space dedicated to managing our health stuff means things don’t get muddled or confused.
Practice self-compassion
Finally, remember that it's natural to feel stressed and tired sometimes, especially when we're taking care of another, but not taking care of ourselves. In those moments, it's important to be gentle with ourselves, and mindful of how we are speaking to ourselves. We're only human. We can't do everything, and if no one else is looking out for our health, we have to do it ourselves.
Showing ourselves the same understanding, empathy and care that we extend to others takes work, but is so important.
When we are no longer able to keep caring
When we find ourselves unable to continue our caring role, it can feel overwhelming.
We may need to rely on emergency plans and support systems to ensure the wellbeing of both ourselves and the person we care for.
If we’re grappling with the difficult decision to end our caring role, we have guidance and support on navigating this transition. We might want to consider paid care at home, or care homes. Remember, we're not alone, and there are resources available to help us through this challenging time.
A final word
If we should take away one thing, it is that looking after ourselves isn't selfish; it's absolutely necessary.
Remember that there's a whole community here ready to listen and support us through any health challenges we're facing. Our Mobilise Hub is a fantastic resource where we can learn from other unpaid carers who have been in our shoes. It's a supportive space where we can find valuable advice and insights from people who truly understand what we're going through.