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Carer’s identity – Is it important to identify as a carer to others, such as employers and friends?

This week I am talking about the term or title of carer or caregiver. How important is that in how people view us and how we see ourselves?

Firstly, the term itself. Depending on where you are in the world, the term might be slightly different. In the UK, we use the word ‘carer’, in the US and Australia, the term is ‘caregiver’. Of course, despite the slightly different terminology, the meaning is the same, ‘an individual who provides unpaid care for a loved one or friend’. As I am from UK and more familiar with the use of the word ‘carer’ I will mostly use that, however, I will try to use both terms.

In their 2016 study, Carers UK found that one in eight adults, that is around 6.5 million people are unpaid carers. They also estimated that each day, another 6000 people would be taking on care responsibility, that equals about 2 million additional people every year. Additionally, they found was that 1.3 million people provided 50 hours or more of care a week and that over 1 million people care for more than one person.

By mid-year this year, 2020, according to UN data, the estimated population in the UK is just under 68 million people. That is quite important to think about because this year, the Carers Week 2020 report stated that they believe there are now 13.6 million unpaid carers. That is over double of the estimate of Carers UK in 2016 and this equates to a ratio of approximately one in four adults having caring responsibilities. Even more incredibly, Carers UK believe that since COVID began, an additional 4.5 million people have taken on that role, huge numbers and that is just the UK.

In the UK there are various definitions of carer, however, I feel the NHS England definition is the closest to how most people would describe someone carrying out unpaid caring responsibilities:

  A carer is “someone who, including children and adults, looks after a family member, partner or friend who needs help because of their illness, frailty, disability, and mental health problem or an addiction and cannot cope without the support, the care they provide is unpaid“.

However, as a result of COVID, that definition has become slightly blurred in terms of how the public may perceive unpaid carers now. The use of the word ‘carer’ has become more strongly linked with paid healthcare professionals, such as NHS doctors, nurses, all the staff who are involved in providing care for those who are affected by COVID. For me, it has made it slightly harder, because now if I mention to somebody, such as an assistant in a shop, that I’m a carer, quite often people then assume that I’m a doctor or a nurse, which, of course, I’m not. So, now I have to further define myself as an “unpaid carer” and often even then, to ensure that it is clear, I end up having to say who I am caring for, it almost feels as if I am justify myself and my role! It isn’t a major issue or problem; however, it is an interesting change in how the term of ‘carer’ might be defined; how the public may now interpret the term and if this has changed how we view our own identity as carers/caregivers? 

Although I will be talking about how we identify ourselves as carers and how it can change how people interact with us, I am not going to delve into identity theory itself, because it is a bit dry and quite complex. However, I will be doing a short course, later on this year, explaining what identity theory is and how it can help us self-identify as carers and why that might be important to our mental wellbeing. However, I am going to give a short description of what social identity theory is, because, in this context, I think it is useful to understand how we can place ourselves, as a body of people, as ‘carers’, and how that can help us both emotionally and psychologically, and can also be helpful when we are dealing with external agencies, such as health care professionals, GPs, etc. The definition of social identity theory is:

“Social identity is a person’s knowledge that he or she, they, belong to a social category or group. A social group is a set of individuals who hold a common social identification or view themselves as members of the same social category”. 

Do you think this definition describes how ‘carers or caregivers’ can be seen as having a social identification? That we can identify with others, similar to us in that role, as a social category of people? I think we can and for some, being identified as being part of a larger group with a clear identity, can bring real strength in knowing that you are not alone and are not invisible. In the past, carers have been referred to, as ‘The Invisible Army’ and I have added a link to an interesting article from The Guardian about this terminology, because I don’t think we are invisible anymore, but I do think we are still unheard. I certainly identify with myself in terms of the social category of being a ‘carer’ and it is important to me to identify myself in that way. I will now explain why identifying yourself in those terms, may help you with the practical side of being a carer, as well as supporting your emotional wellbeing.

Taking on the role of caregiving means having a distinct and separate relationship with the person you are providing the care for. That is quite important when we think about what different identities we already have: wife, husband, child, parent, lover, friend. Carers UK found 54% of individuals take over a year to recognise their caring role. NHS England reported that it takes people on average two years to self-identify as carers. One in four, about 24% took over five years and nearly one in ten, that was about 9%, took over 10 years to recognise their role and potentially self-identify as a carer or caregiver.

Deciding who we want to disclose to or share that we are a carer with, will quite often depend on the relationship we already have with them. Are they a close family member or are they a part of your extended family? Perhaps it is a friend, and this is particularly important for young carer, as they may find it harder to share with friends, that they have a caring role at home. Perhaps you have a loved one, partner, boyfriend, girlfriend that you haven’t spoken to about it before and perhaps now it feels awkward to mention it? Work colleagues, this can be a really challenging one, as is disclosing or speaking to an employer. Perhaps you are at school or in college or university? Again, choosing to disclose or discuss the role with someone can be quite difficult, particularly if you don’t know them that well. Even talking to or disclose it to healthcare professionals, doctors, nurses can be difficult and the reaction you get, can be surprising. I will give an example of what happened to me a bit later. External organisations, government agencies, depending on the allowances and the support that you need, will determine how much contact you have with them and perhaps may force you into a situation where you need to self-identify as a carer to receive support. And lastly, thinking about social groups, groups that you are part of, such as for hobbies, or activities you enjoy with friends. Quite often these will be the last groups you decide you want to share the information that you are a carer. 

These are some of the reasons why people decide not to identify as carers. Quite often is to separate the different relationships with the cared-for-person or loved one, so it could be a daughter caring for a parent; parent caring for a child; husband caring for his wife or partner for a lover, and they still want to be the that; ‘Mum’, ‘Dad’, ‘lover’, ‘child’.  Often carers want to keep that separation between the roles, so they can be the ‘carer or caregiver’ a home, but still be themselves when they are out with friends or in a social group. They feel that they will still have a sense of their own identity, and not just carry the identity or label of being a carer in all areas of their life. I just mentioned ‘label’, and it is a terminology used in a lot of theories, in fact there is a whole theory around it! and it is something that people feel quite strongly about, not wanting to be labelled or put in the ‘carer’ box. So, that’s something to think about when we go on to think about how we can help to support ourselves by possibly self-identifying as a carer, but in a way that is comfortable for us. 

I mentioned a little earlier about disclosing you are a carer to healthcare professionals. I have found generally, since I have been a caregiver for my loved one, that people have been very supportive, particularly in the area we live in at the moment and I am grateful for that. However, in the early days, when we lived in another county, the attitude of one of the healthcare professionals, a nurse, was disrespectful, bordering on aggressive. Fortunately, I am able to speak up for myself, so I was able to ensure that my loved one and myself were treated with a little bit more respect, and the treatment my loved one was receiving was carried out in an appropriate way. I found the attitude of this nurse very disappointing, but due to my age, personality and life experience, I was able to protect my loved one and ensure that this individual’s behaviour was report. However, not everybody would feel comfortable speaking up in similar circumstances. So, it is one of the reasons why some people choose not to self-disclose as a carer, because they fear the reactions of others. This is real a shame, as it may limit the support carers could receive, but fortunately, it is something that organisations such as Carers UK, NHS England and other providers, are addressing and trying to ensure that carers are identified and treated with the respect they deserve. 

In the workplace, people may feel that they don’t want to disclose to colleagues or their managers because they will miss opportunities at work. Perhaps they are not on a permanent contract and may lose the role completely or they may feel that they will be passed over for promotion. For some people, it is a lot more emotional, because by not saying the words, they are not acknowledging what is happening. They may feel that if you do say those words, it makes it ‘real’, and there is no were going back from that and are not ready to identify that they are performing a caring role. As I said earlier, ‘unpaid caring’ is distinct and separate from the other relationships you may have with your loved one and sometimes you need time to come to terms with it, before acknowledge it and by describing yourself as a carer to others. Looking at this from the cared-for-person perspective, they may feel sensitive about having someone disclosing the fact that they are their carer, when they may not have acknowledged that they actually need assistance or formal care. So, we need to be respectful of what our loved one wants as well, in terms of how we identify ourselves, particularly with external organisations like healthcare professionals and GPs and friends and family.

There can also be confusion about the term and whether it applies to us. We can think that it only applies to situations where a person is caring for somebody with a physical need and perhaps, they are in fact, looking after someone who has mental health difficulties and therefore, they don’t see what they are doing as being separate and distinct from the rest of their relationship with that person. Those providing distance care might also feel that the ‘identity’ of carer or caregiver doesn’t apply to them. Carers UK estimates that approximately 30% of carers live at least two hours away from the people they are caring for. Similarly, they might not think about the role as being separate and distinct from their existing relationship with the loved one, as they may be organising paid care and support with shopping and meals, etc. however, these activities are all still part of the caring role.

Quite often the relationship we have with the cared-for-person can impact on how we view ourselves. Researchers found that the closer the relationship, the less likely we are to identify with the term of carer or caregiver. There may be some level of separation between the activities that someone carries out and how they relate to being a carer, but we view it in a different way. For instance, in a study relating to carers who care for loved ones with multiple sclerosis (MS), the participants felt that they weren’t necessarily, certainly not initially, physically caring for that person, but they were just contributing to their wellbeing. So, it is a different way of thinking about who or what a carer is and how we might identify ourselves when carrying out the role. 

However, when people do feel that they want to or need to self-identify in the role, it can be when the demands of the caring element of the relationship begins to outweigh their other identities in that relationship, such as a wife or husband and this was also reflected by participants in the MS study mentioned above. Another reason can be that by identifying yourself as a carer, you might be able to access more external support, either in the healthcare system or perhaps by way of allowances or financial support. I didn’t identify as a carer for nearly a year and then when I did, I was actually able to access some financial support, which was a relief and helped to reduce my levels of stress and anxiety. Another reason why carers make the decision to self-identify is when they feel that the role is becoming too much for them, and they know that they can no longer continue giving the physical, mental and psychological support to someone, at the level required. Lastly, for some, they only identify themselves as having been a carer or caregiver when the active part of caring has ended. It might only be when they look back and reflect on the relationship with their loved one, that they recognise that what they were doing was distinct and separate from the other parts of the relationship they had with the person, so it can be retrospective but still a powerful and emotional experience. 

So, how and why is it useful to consider identifying as a carer?

Well, first off, we all have multiple identities and identifying yourself as a carer will probably link to your values and beliefs.

  • What’s important to you?
  • When you say the term ‘carer/caregiver’, how comfortable do you feel with it?
  • Does it sit right with you or make you feel uncomfortable?

It is important to consider how you ‘feel’ about the word or term and if it doesn’t feel comfortable, then think about using alternatives such as “I’m caring but I’m not a carer”.  Identifying formally as a carer or caregiver to authorities such as healthcare professionals, can start a process of getting vital additional support. However, sometimes it still isn’t going to be an easy process!  In the UK we can apply for a Carers Assessment through your local authority and this can be the first step to identifying the support you might need moving further into your caring journey. Also, in some parts of the UK you can apply for a Carer’s Passport, provided through your local authority again, but the scheme isn’t being run across the whole of UK, so you would need to check in your area.  

When, thinking about who you might want to disclose you are carer to at the beginning of your journey, will help you to feel more comfortable when you need to have those conversations, by having the confidence, knowing you have thought about what you want, to then be able to respond in a way that you want to. Another thing to consider is, self-identity isn’t something that you are stuck with. If you decide that, at that moment the time isn’t right, then you are not obliged to tell anyone, and you can always change your mind in the future. The intensity of the role may make you feel that actually there is a point where you need to self-identify as a carer or caregiver and that is also okay. Even if friends and family say well, ‘why didn’t you tell us before?’ If you thought about why you didn’t want to let them know before then, you can confidently say that it was a choice you had made, and now you would like to discuss it with them. It is up to you at the end of the day, you should never feel pressured into doing or saying anything you are not comfortable with. When I describe the social identity theory definition earlier, it was about being part of a larger family; a family of carers and even though you may not personally know someone else who is caring, knowing that you are part of the global family of carers should bring you comfort and strength, I know it does for me.

I know that for some identifying as a carer or caregiver can give them a real sense of pride, that they are able to do something amazing for their loved one, to take extra care of them, perhaps becoming an ‘expert carer’ and help others. In the future I will explore emotions further, because having a sense of comfort and pride from what you are doing, having satisfaction and meaning as a carer, is actually a really important part of emotional resilience. Identifying yourself as a carer, particularly when other family members or friends are involved, can also help to facilitate those difficult conversations and help to reduce the stress and anxiety that you may feel in the role.

Another way self-identifying as a carer can support your mental wellbeing is when having to make difficult decisions. Perhaps there may be more than one person caring for a loved one, and while this can be helpful, sometimes it can be more stressful when it comes to making bigger decisions, particularly involving significant changes or have financial implications. So, considering and discussing who will lead on decisions or how you are going to make family decisions, before you are at the point when you need to make them, will make it less stressful when the time comes.

Drawing on the strength and experience of other carers, particularly if you are new to the role, is very helpful. There are organisations who will act as advocates for carers, if they need to speak with external authorities such as employers, government officials or healthcare professionals and they feel uncomfortable or are unable to communicate for themselves. However, you would need to self-identify as a carer first, to be able to access this type of support.

In terms of the workplace, it is important to know your rights. I have included a link to a fact sheet regarding work related rights in the UK and it is worth doing some research before planning to have any conversations with your employer. Knowing where you stand legally, will  help to make you feel more comfortable when having those conversations. There are definite benefits in speaking to your employer and colleagues about being a carer. It may be that you can access paid or unpaid carers leave, in fact there is a UK government consultation document out at the moment looking at the formalisation of unpaid leave for carers, so it is worth checking the Carers UK website regularly for updates on that. Knowing you are able to take time to attend appointments with your loved one, will help to reduce stress and anxiety. Career breaks are sometimes another option. I was lucky, I had the opportunity of taking up to five-year career break and I took two separate breaks nearly up to that time, which really helped me through some different periods when I needed to have extra time with my loved one. If this is something you would consider, so you could return to work in the future, then do speak to your employer, if you don’t ask, you may be losing out! Access to flexible working, such as staggered start time or flexi-hours, can make the difference between being able to continue to work, with all the financial and additional support that goes with that or possibly having to leave. The company or business itself may well have a support group you could access, so worth speaking with colleagues or your line manager to find out what might be available. It could even be that a colleague may be in the same position as you and they may be keen to support you and also to know that they can rely on you to understand their situation. So, do think about identifying yourself as a carer/caregiver, when you are ready, as there can be some real benefits for working and in supporting your mental wellbeing. 

Your employer may not aware of the challenges and the issues carers face, many aren’t and by talking to them about your role, it may allow them to not only support you, but perhaps, other members of staff as well.  Carers UK have a business called, Employers for Carers, which organisations and businesses can subscribe to and receive information and guidance in how best support their employees who are caregivers. If you are an employer, you may be thinking: what’s in that for me? Well actually, there are quite a few benefits to supporting employees who are carers. It is estimated that, already, 90% of working carers are age 30 years and plus, so those are employees in their prime employment years. The peak age for caring is still between 50 and 64, many of your employees might be in this age group and are likely to be valuable to you and your, due to their knowledge, skills and experience. So, losing staff members in either of these groups may have a significant negative impact on your businesses profitability. The Corporate Leadership Council estimates that the total cost to an employer of an employee leaving work is equal to the employees last salary. While the Hay group suggests that it could be anywhere between 50% and 100% of that person’s salary. So, by offering a flexible approach to working for your organisation, and supporting people who may be caring for others, you may find that it has a positive effect on individuals’ performance and your business’s results. How impactful would it be to be able to say that you are an ’employer of choice’, because when your employees come to work for you, they know that they are going to have an opportunity to be heard and be supported by you. 

When I was conducting the research for this post, I came across so many stories of carers who said that they wished that had identified themselves sooner, as they would have then known about the support that was available and how it would have made their lives a lot easier and they wouldn’t have felt so alone. Ultimately, it is a very personal decision to make, whether or not you tell someone you are a carer, but it is something I would urge you to think about seriously. If you chose not to at the moment, there’s no rush, but do think about what the benefits might gabein and who you would want to have that conversation with. I am glad I do identify as a carer, but I know some people, including friends and family, don’t understand the role and I get that. But actually, it is important that I do have that separation between what I do as a daughter, and what I do as a carer. However, as I say, it is a very personal decision, and I hope this information will help you to have those thought processes and to prepare for those conversations when you are ready.

If you have any suggestions, comments or ideas for perhaps some future posts, please let me know at enquiries@carershearts.org

All the resources and references in the notes below, so please have a look at those.

The next post is on the 15th of August, and it’s an introduction to finding meaning and purpose as a carer.

Thank you so much for reading this post, I hope you found it useful. I hope you can join me next time and remember, for a special thing it is that you do.

Resources
Who is considered a carer?

Carers UK: Facts and Figures

Carers Week 2020 Report

Stop calling family carers a ‘hidden army’

Missing out – Identification Challenge 

Working Identity: Unconventional strategies for reinventing your career. – (Affiliate Link) 

Employers for Carers  EfC – Business case for supporting working carers 

Kent Carers Matter– Example of organisations supporting carers 

The Caregiver Identity Crisis 

Carers UK and Carers Trust Resources 
Worth caring about

Being Heard: A self-advocacy guide for carers

Being objective

How do you communicate?

How to be more assertive

Preparing to negotiate

Reflecting on events

Carers Assessment Factsheet – England, UK

Your rights in the workplace 

Top tips for carers


References 
Frankl, V. E. (1963). Man’s search for meaning: An introduction to logotherapy. New York: Washington Square Press

Hogg, Michael A. and Dominic Abrams. (1988). Social Identifications: A Social Psychology of Intergroup Relations and Group Processes. London: Routledge.

Hughes, N., Locock, L., & Ziebland, S. (2013). Personal identity and the role of ‘carer’ among relatives and friends of people with multiple sclerosis. Social science & medicine (1982)96, 78–85. https://doi.org/10.1016/j.socscimed.2013.07.023

Lloyd, L. (2006). Call us carers: limitations and risks in campaigning for recognition and exclusivity. Critical Social Policy, 26(4), 945-960.

Stets, J., & Burke, P. (2000). Identity Theory and Social Identity Theory. Social Psychology Quarterly, 63(3), 224-237. Retrieved July 13, 2020, from www.jstor.org/stable/269587


Music Composed by Michael Coltham  – Black Lab Music