Selflessness is self-harm

When a carer experiences trauma and harm at the hands of their cared for person.

Six months into our new life as man and wife, my husband experienced a series of life-altering health issues. Over the course of two months, my husband underwent two surgeries and suffered a stroke. As a result, he lost thirty kilograms in body weight and eighty per cent of his colon, which led to the formation of a mucus fistula.

The experience was quite traumatic for him, and it had an enormous impact on me, his new wife, and our respective families.

My routine was significantly altered as I had to learn new tasks and skills related to healthcare, such as changing dressings and catheters, administering medication, bathing, dressing and feeding an adult. In addition to this, I swiftly became familiar with bed sores, temperature control, bed rotation, and medical terminology. I quickly mastered the art of confidently communicating with consultants to obtain the necessary information required to provide the appropriate care for my husband.

My husband was discharged into my care without the help, advice or guidance of the “community care team assigned to him.”

It would be ten years before I knew of the help and support available to “people like” me who choose to look after their loved ones. I also learned about “respite care” that offered “carers” like myself opportunities to take a day off from their caring duties.

I didn’t know the importance of separating the roles of wife and carer. My husband, unfortunately, misused the fact that I would look after him for as long as it takes. I was being taken advantage of, but I didn’t see it for what it was. I never learned to read the red flags, and when I did see them, I pushed them aside and made excuses and allowance for my husband and what he was going through. I never looked at what the stresses of caring for not just another human, but an adult, were having on me.

I was going through burnout but was too focused on my caring role to notice. My health was affected, and my body had begun sending out warning signs that it was struggling. I experienced sleep deprivation, loss of appetite, weight loss and gain, mood swings, etc. The stress had become so fierce that my hair began falling out. I experienced premature greying, and my body went into early menopause. I also experienced tension headaches, and I was holding on to my sanity for dear life.

We never got to celebrate our marriage, and I never mourned the loss of it.

During this time, I was still fulfilling my role as a mother and full-time home educator to my youngest son. I was taking on external clients as I had left my job as a photography tutor to care for my husband.

At no point did I ever think of myself. That would be too selfish an act. I was functioning under the pre-conditioned mindset of prioritising the needs of others above my own, an approach instilled in me from childhood. I unwittingly lived by those false values to the detriment of my health and well-being.

The saddest part of my journey, and the most unfortunate, is the fact that my husband became abusive; I suffered alone for seven years before plucking up the courage to seek help. My husband has now left the country.

By failing to take responsibility for my safety, I made every excuse in the book on his behalf — it was the medication, it was his illness, and he was frightened. I was engaged in self-harm without realising I was doing so. I must admit, it took me some years and a lot of tears to acknowledge and accept to myself, the truth of what I was going through. I was suffering at the hands of the very person I was giving my life up to protect and serve. I was giving free rein, power and permission to another human to treat me how he saw fit.

A wise woman once told me: “The illness of your cared-for person is not your own. Protect yourself. Love yourself first.” Though I understood her message, it would take two years to hit its mark.

The process of getting over my broken marriage was a long and difficult one. I experienced self-doubt and guilt as I questioned what, if anything, I could have done differently to prevent the misunderstandings, hurt and breakdown. However, I had to get to the point where I could see, understand and realise that these thoughts were not always about the other person but rather what was best for me. I was proud of the fact that I was a wife, and I was pleased with the level of quality care I was giving to my husband. But there had to come a time when I needed to reflect on and prioritise my needs, well-being and safety. I realised how much of my life has been spent pleasing others, and even in my deepest hurt, when I was faced with danger, I was still prioritising the health, well-being, and safety of others over my own.

As caregivers, it’s natural to prioritise our nurturing role and dedicate most of our time to caring for our loved ones. However, it’s crucial to remember that our own well-being is equally important. Neglecting our own health and happiness can lead to burnout and negatively impact our ability to provide care.

I transformed myself from being a people pleaser to loving, respecting, and protecting myself. I became my own first-response support unit, letting go of the mountain of shame I was buried under, and reached out to professionals who were trained and equipped with the knowledge and skills to help me climb out of the bog. I gained a sense of appreciation for myself that I’d never thought possible. My perception of and belief in me have grown a hundred-fold. I can look at myself in the mirror and love what I see. I can smile and the person looking back at me, with deep love and great admiration. My self-esteem has skyrocketed, and I have grown in confidence.

I now practise daily self-love. My self-care rituals include setting time aside to breathe and be alive. I set aside time to enjoy a pot of tea, listen to calming music, go for walks in nature and write in my journal. These activities help me climb down out of my head, be attentive to my heart and enable me to remain focused on what’s important and right for me. By actively participating in activities that help uplift my spirit and improve my mood helps stave off mental health rot and put me back on track to being healthy. I also eat more healthily and rest when my body requires it. I’m glad I’ve embarked on a journey to discover who I am and how best to serve others in a way that would have me do so from a place of truth and integrity.

My advice for you, dear carer, is to take steps towards maintaining your own physical and mental health as you go about your caregiving responsibilities.

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