Episode 4 - Karen is more than a carer
Even now, an eating disorder is still a very misunderstood, complex, and life-threatening condition which is caught between mental and physical health care systems. As a carer I felt a lot of loneliness, frustration and despair.
My daughter is now 23, graduated from Uni and lives independently, so my story began 8 years ago.
How did you become a carer?
My youngest daughter was diagnosed with an eating disorder at 15 and was sent into hospital.
Like so many people, she had wanted to keep her illness a secret and had accessed the eating disorders service on her own. As she was still a minor, this meant that the social services were alerted, which actually caused more stress for both of us, in what was already very stressful situation.
For the next few years, my daughter was in and out of various hospitals; the nearest was 27 miles and the furthest was 100 miles away from home. Whilst she was in hospital it was heart-breaking.
I visited as often as I could and then whilst she was at home, we did our best to support her, but it was very hard. Her father and I divorced many years before and he wasn’t around. I am incredibly grateful to my parents and my older daughter for their help.
Has being a carer changed what you decided to do for a career?
I was a trained nurse working in public health at the time and was just beginning a full-time one -year course to become a health visitor, which was too late to postpone.
I continued with this as best I could, and in a way, it gave me something else to focus on. I enjoyed the company of some of my colleagues who were very supportive. But it was a double-edged sword because the work I was doing was also stressful.
In the end it became too much. I cut my hours as soon as I could and then took sick leave for 5 months. After my leave, I left my work as a health visitor, working with children and families, and went back to bank nursing in the hospitals because it meant I had some control over when I worked.
The effects of stress caught up with me again and I left nursing altogether.
Now, after finding a wonderful way to look after my own health, I am a self-employed Coach and share the well-being tools and techniques I have learnt with my clients.
Was your employer aware of your caring role and responsibilities?
At the time I told my close colleagues and my manager.
In order to change my job within the NHS, I needed to go to various meetings and involve more people. My daughter is now 23 and lives independently.
Did you feel supported at work by your employer?
Some colleagues were incredibly supportive, and others were not supportive. It was exhausting trying to explain to people at work who really didn’t understand and came across as quite judgemental about eating disorders.
Thankfully, my line manager was helpful and the policies in place at the time allowed me to take time off and still be paid up to a point. Later, as an NHS bank nurse, I was of course only paid when I went into work.
Did you think about leaving work back then? Why?
I did leave work in the end.
Other stresses accumulated and when the 2020 pandemic started, I decided to support my daughter and she came to stay with me for a while.
Later I made the decision to leave nursing altogether and since then I have focused on my well-being business, which has a completely different feel about it, and I enjoy very much.
What have you personally struggled with being a carer?
The feeling of loneliness and exhaustion. Sometimes despair. In private, I cried a lot!
I also felt very angry and frustrated with the lack of resources and understanding within the health and social services, and with the way my daughter was being treated. There were exceptions of course and some individuals were very caring.
Help is available and you can download the carers pack below:
Have you found answers to questions you have had?
There is a book which I definitely recommend called ‘Skills-based Learning for Caring for a Loved One with an Eating Disorder’, The New Maudsley Method’ by Janet Treasure, Grainne Smith and Anna Crane.
It’s practical and real.
Even if it’s not possible to implement everything in it (which I couldn’t), it certainly helps with understanding and dispelling the myths.
What advice would you have given yourself before becoming a carer?
Take as much pressure off yourself as you possibly can. That includes not holding on to feelings of guilt. Feel as much love and compassion for yourself as you do the person you are caring for. Take whatever opportunity you have to replenish your energy and accept support. This is not indulgent, it’s vital for your own health and well-being.
For people who are particularly empathic, which includes many carers, give yourself a dose of reading or listening to ‘Sensitive is the New Strong. The Power of Empaths in an Increasingly Harsh World’ by Anita Moorjani. She is excellent at empowering you on how and why you must take care of yourself. The mindset shift in itself is energising!
Sharing experiences like those of Karen not only helps others to become better equipped to handle whatever is thrown at them but also guides the support and solutions Bridgit and partners can offer.
When was the last time someone asked you, ‘How are you feeling?’
We want to hear from you about the challenges you face as a family carer.
Please share your own experiences by clicking the image below