In this episode I want to explore the impact of social isolation some breast cancer patients and their carers may experience during treatment. Social isolation is another layer of stress and heart ache added to what is already a stressful situation. The impact of this can leave you feeling isolated and lonely. The stress can also have devastating consequences to you and your loved one’s overall wellbeing and might hinder recovery. I think it might also be important to share this advice further than the direct caregivers to your wider friendship groups as it might well be ignorance that does much damage unbeknown to some people.
What is Isolation? It’s feeling disconnected from friends and family, feeling like you can't talk about your emotions or share your experiences for carers it could be feeling like you have to handle everything on your own.
Social isolation for breast cancer patients and their caregivers refers to the feeling of being alone or disconnected from others, both physically and emotionally, due to immense changes they are going through as a result of the cancer diagnosis.
Several studies underscore the impact of social isolation. Research indicates that social isolation is linked with the increased risk of tumor recurrence and mortality among patients with breast cancer (Kroenke et al., 2017)
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Breast cancer patients and their caregivers often experience isolation due to a variety of reasons.
Undergoing treatment such as chemotherapy or radiotherapy might feel physically unwell, making people unable to participate in social activities or tasks they were once part of. This can increase feelings of isolation.
We can relate to this; we had a busy social life and we both enjoyed keeping fit and exercise. These activities where an enjoyable social activity, so the normal routine was total thrown out once treatment started. In terms of going out and socialising at parties or to the pub, this was also difficult, and our social circles definably changed. My role for supporting Catherine in this was to listen and understand Catherines frustrations at not being physically able, through sickness or tiredness following treatment to attend certain events. It was hard when we couldn't attend, but harder when we hadn't been invited because others assumed Catherine was unable to.
Alteration in Body Image and Self-Perception
Surgery or treatments often lead to physical changes, which can impact a person's self-esteem and confidence, leading to social withdrawal.
I can relate to some of this, one big issue was with the wigs Catherine wore. She was terrified of the wig getting accidentally caught onto someone and being tugged off leaving her scared of being shamed. Also, holidays had always been something we worked hard for and enjoyed time together as a family. Finding the right swim wear to cover scars and that would suit the prosthetics and finding decent prosthetics that matched her remaining breast also added to the stress and anxiety leading to avoidance of certain situations.
And more generally the overall effect of the treatment, surgery and causing a low self-esteem contributed to Catherine not wanting to go out and to avoid people and having to defend awkward questions with reasons to cover up personal and embarrassing body or perceived body image changes.
For me as her husband, my role was to support her choices and step in to defend or deflect stupid questions. Most of all I need to reassure her that I loved her all the same, lumps, bumps and missing parts all included.
Emotional Factors
The emotional trauma experienced by patients and their caregivers often lead to feelings of loneliness and isolation. Fear, anxiety, and depression are common, creating emotional barriers between them and their social group.
If getting a cancer diagnosis and facing your own mortality isn't bad enough, the emotional trauma was made worse by a certain level of rejection or absence of the people we considered to be our closest friends. I remember the hurt felt by Catherine that people no longer messaged or contacted her. And when they did it was to find out some information that they could gossip about. It really was a horrible time and Catherine was hurt by this on multiple occasions. I too as her husband and carer found my own friendship group had changed with my own friendship circle changed. It was hard to understand, and my own emotional wellbeing took a battering through this time.
My advice now to anyone else facing the same challenges would be to keep in contact with friends and family. Tell people straight out what you are and are not willing to discuss about your treatment. Tell them how much you need their support and encouragement and when you need it. And be mindful that some people really matter in these circumstances and other not so much. Thats okay. We found wonderful new friends through this and lost some friends that on reflection were not so important.
Don't isolate yourself and engage in other communal gatherings and meet new people. Forgive anyone who hurts or lets you down and free yourself from any hurt you are holding onto as this is only hurting you and not anyone else.
Lack of Understanding and Support
Not everyone can understand what a person with breast cancer or a caregiver is going through. This gap in understanding may lead to reduced social interactions. There is a perception that 'they look okay, so they must be okay'.... Even with breast cancer there is a thought from some people that all breast cancers are the same. This is a common misconception and in fact there are several different types of breast cancer and each treatment differs and the side effects and visible effects can be very unique to each individual. With some of Catherines treatment she hid the side effects well and always looked amazing throughout. This had the effect that people assumed she was okay and therefore there is no need to ask any awkward questions. One of the big hidden side effects was the mental health deterioration. Catherines confidence was taking a battering. The stress and strain for us to both put on a persona of being okay and soldiering on was hard work. Something we couldn't maintain forever.
I think for us both, the lesson to take from this was that we should have been a little more open about our struggles, treatment, and general wellbeing. I think keeping this in was damaging to us both. If other knew what we were going through they may have been more sympathetic and supportive.
Time Constraints
Caregivers are usually tied up with taking care of the patient, taking them to doctor's appointments, and managing their own jobs or household, which leaves little time for social activities.
I think I knew this, but my priorities were with Catherine and the kids. I willingly gave up my social life to concentrate on Catherine and the kids. I do remember on the odd occasion I did do something with my social life, I would feel incredibly guilty about leaving my duties to have some fun. I still today whilst writing this have that same guilt and I do avoid some social activities because of feeling guilty that I might be neglecting my family.
It did feel relentless at times, working, coming home, housework, kids, DIY....... Thinking back, I guess it would have been good for me to take a break sometimes. That would be my advice to any carer, to make time for yourself and your own interests and hobbies. Try and find a happy balance.
Nonetheless, social isolation can be harmful, leading to increased stress, depression, and poor treatment outcomes. Therefore, it is crucial to seek emotional support as carers, encourage social activities, and get involved in peer-support groups or online communities. Medical professionals and charities can provide needed resources or recommend counselling services to help manage these challenges.
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Friendship and fellowship have always held a significant place in our lives. They are the pillars that support our happiness, as we create cherished memories and share incredible experiences with those, we consider to be our friends. These connections often become an integral part of our lives, to the extent that we view our friends as an extension of our family. They offer us support, help us in times of need, and lift our spirits during difficult moments. In return, we reciprocate this love and care, making sure to be there for them whenever they require our assistance. This bond is built on a foundation of trust and vulnerability.
Throughout my life, I have been fortunate enough to have met some incredible individuals who have graced my existence with their presence. Together, we have created countless beautiful memories that I will forever hold dear. Their friendship has been a true blessing, enriching my life in unimaginable ways. We have laughed together, cried together, and celebrated each other's successes. Their unwavering support has provided me with the strength to navigate through life's hardships. There is an undeniable comfort that comes from knowing that you have people who genuinely care for you and will stand by your side through the good and the bad.
However, life has a way of throwing curveballs at us when we least expect it. Despite the immense joy that friendship brings, there have been instances where social isolation has seeped into our lives. The people we trusted and held dear let us down, shattering the very foundation on which our relationships were built. It is a heartbreaking experience that can leave us feeling both terrified and vulnerable. In our darkest moments, some of those we believed would be there for us drifted away, leaving us feeling abandoned and betrayed. This harsh reality is something that terrifies me, for I am acutely aware of the devastating impact it can have on one's mental and emotional well-being.
It is crucial to acknowledge the tone of encouragement that accompanies these thoughts. Yes, there may be instances where friendships falter, and the individuals we once trusted fail us. However, it is important to remember that these experiences do not define the entirety of friendship. They are painful lessons that teach us to be cautious, to choose our friends wisely, and to nurture the relationships that bring us genuine joy and support.
In the face of social isolation, it becomes necessary to draw strength from within and rebuild the shattered fragments of our trust. We must remember that not everyone will let us down, and that there are individuals who will cherish and value us for who we are.
By surrounding ourselves with those who uplift and strengthen us, we can overcome the fear of abandonment and rebuild a support system that will provide us with solace during the toughest moments in life.
Friendship and fellowship are undeniably incredible things. They bring immense joy and create lasting memories. They have the power to transform our lives and make us feel truly blessed. However, they are not immune to the trials and tribulations of life. There may be moments of social isolation, times when the people we entrusted with our hearts let us down. These experiences, although painful, are an important reminder to surround ourselves with genuine, caring individuals. They teach us the value of discernment and the significance of nurturing the connections that truly matter. Ultimately, it is through these experiences that we grow stronger and learn to appreciate the true essence of friendship.
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In a recent interview I was asked some questions about social isolation and my time as a carer, they included the following:
Q. Can you share your personal journey as a primary caregiver to a breast cancer patient? How did this role transition begin for you?
A: I made that promise to Catherine and God when we married in 2007. The breast cancer really put this promise to the test. There was no training, no preparation, I was thrown into the deep end with this new role, and I had to try my best and do whatever I could to support Catherine. It was fight or flight! I chose to fight alongside Catherine. In terms of transitioning, I guess slowly and over time I learned to become attentive to her needs and ready for the uncertainty and surprise events that would happen throughout the treatment.
Q. Making the shift from usual to new normal, especially during treatments of such devastating disease, comes with numerous complexities. What were your initial thoughts and fears about social isolation during breast cancer treatment?
A. Our focus was on the treatments and keeping the children’s and out home life as normal as possible. In terms of social isolation, we were completely unprepared and unaware of this, and I guess looking back, we didn’t know about or understand and we were caught by surprise. Infection risks and body image played some part in this. But equally other people avoided us and that really hurt.
Q. How did social isolation affect your responsibility as a caregiver? Did it intensify the demands of your role?
A. Social isolation affected my responsibility as a caregiver by placing greater demands on me, I became a sort of punching bag where Catherine would release her frustration of missing out or being left out. I had to learn to understand and at times it felt like we had been left alone in our struggles. This was countered by the good friends and family we had around us and our faith. It did intensify demands on my role in a way, watching and trying to help a person you love so deeply avoid being hurt and seeing them getting hurt is a deeply traumatic and at times a difficult thing to bare.
Q. Isolation often results in a significant impact on our mental health. What mental health changes did you experience during this period, and how did you manage them?
A. Yes, I have been effected by mental health issues and I would say I’m still dealing with the damage caused by this over 8 years on. I definitely had anxiety stress, intrusive thoughts of the future and worry about being able to cope as a parent, husband and carer fears of death and dying. There was some depression and feelings of hopelessness, feeling sad and lonely at times. I do recall feeling burnout emotionally and this affects me now as I know I find making emotional decisions difficult. I also found myself withdrawing from social events. I’d had enough to battle and at times I couldn’t face people anymore.
Q. As a primary caregiver, how did you ensure a continuous support system, both for Catherine and yourself, while being socially isolated?
A. For Catherine, we did have continuous support through our family and closest of friends. For me I don’t think I really accepted help for myself from others although my own family helped with the children to allow us to attend appointments and even have a rare night out together or with our closest of friends.
Q. Can you share some strategies or tools that aided you in coping with the emotional, psychological, and physical toll of both the treatment and the isolation?
A. For the emotional side of things, I would defiantly recommend seeking support through friends, family, and local support groups. Sharing your concerns and worries can be beneficial. Sticking to a routine of self-care and relaxation and making time to do things you enjoy. It doesn't have to be a big things, perhaps just listening to music or reading. Taking your mind off the worries for a short time can help you process and put things into prospective. Using tech to connect can also be helpful, particularly if you are isolating because your partners immune system is shot and their vulnerable to infections. It’s also important to manage your own mental health and practice some self-care. For me this was taking time to pray, you may want to practice another form of meditation to manage your stress. Seek counselling if necessary, a professional counsellor can see things that are hurting you and suggest useful coping mechanisms or strategies to help you both.
Educating yourself about breast cancer can also help you better understand what the treatments and what your loved one is going through. This can help you feel more prepared and less worried.
For the physical side I would recommend strategies such as staying active, exercise is great for reducing stress and improving your mood and boosting you overall health. This can go well alongside eating well, the right food can keep your energy levels maintained and support your immune system. Getting the right amount of sleep and rest is also crucial for both of you. After a while we learned to set limits and to ask for help and delegate tasks to other people. Overall, it was important to be aware of my own health to try and prevent burnout.
Q. Has your relationship with the patient (and possibly with other family members) changed due to this experience? How did social isolation impact these relationships?
A. The short answer is yes, we grew closer together, a whole new level of love, and this includes some family members and friends. Some others became distant and strained. Even 8 years on there are people we have not reconnected with. I have described this journey was like a magic torch for relationships, people who mattered shone brightly in the beam of light, people we thought were important but were not, disappeared.
Q. How do you feel the healthcare system addressed and managed concerns related to isolation during treatment? Were there resources/support offered, or certain aspects you felt were overlooked?
A. I think the health care system was fantastic in terms of addressing treatment and looking after physical health. Social isolation has a massive impact on mental health. There where charities offering some support in this area. But none from the Health Service. I think this is a real tragedy as we know mental health has a big impact on the chances of a patient’s recovery. It was very stressful, and I think support in this area for both the patient and their primary carer would have an amazing positive impact.
Q. Reflection often yields wisdom. In hindsight, is there anything you would have done differently to handle the isolation during the treatment period?
A. Defiantly. With hindsight I would have been more open to asking for help from the start. Encouraging more openness and honesty about stages of the treatment with friends and family. Seeking mental health support for both of us. Asking more people to help and support us, even if it would have been just a phone call.
Q. Are there any resources or communities that you would recommend to others going through a similar situation?
A. Yes, I have added a page to this website with useful links to other organizations that can help and this web site itself is for the caregivers to find resources and information.
Q. What's one piece of advice you'd offer someone who finds themselves becoming the prime caregiver for a loved one dealing with breast cancer, especially in times of social isolation?
A. Look after yourself so you can be in the best possible position to help your loved one. Stay engaged with social activities and encourage openness and support from friends and family. Don't be too proud or frightened to ask for help. Don't forget before a carer you are a husband, partner, friend of the person you are caring for. Love them first and switch off from being a carer when the time is right.
This is the end of this blog and I would encourage our readers to read on the next blog that explores how our Christian faith really helped understand and cope with Social Isolation.
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