I reached out to Beat hoping to become a volunteer about six months ago. Before that, I hadn’t heard of the phrase ‘sibling carer’ and had never really thought of myself as being one. Though my older sister had lived with anorexia nervosa for a year whilst we were both in our early teens, and my mum, sister and I all lived together during that time, I didn’t really think about my experience of what had happened.
I can remember, when my sister was seeing a counsellor every week, that I would always sit in the doctors’ waiting room with my mum. One of those times, I remember the counsellor hesitating before following my sister into the room. She stopped to ask if I would like to go in too. As strange as it seems now, I can remember laughing to myself, and feeling like the counsellor must have misunderstood why I was there. I felt embarrassed. I wasn’t unwell, or having to be conscious of how much I ate – it wasn’t happening to me. But the question was asked purposefully, not accidentally or out of politeness, and the counsellor knew something that I have only recently understood. She knew that I was more involved in my sister’s illness than I felt, and that it was affecting me too. Witnessing my sister’s experience, though without any physical or tangible effects upon me, was making an impression of its own.
Yet, at the time, I felt very detached. I think this was partly because I didn’t understand what was happening, not really. I had heard of anorexia before, and knew that my sister needed medical treatment, but I couldn’t see the bigger picture. My sister’s illness coincided with so many other changes in our lives: our parents had recently separated, meaning that my sister and I had to move house with my Mum, and we had both recently started high school. In my mind, anorexia was just one thing amongst everything else that was going on, and I couldn’t see it separately from that. Of course there would be angry rows, and feelings of hurt for days at a time, but I didn’t see what it had to do with anorexia. I just thought our family had broken, and that there was very little that could be different about the situation. I also felt detached from my sister, and struggled to understand what she was experiencing. It seemed like she had withdrawn, but I didn’t know why and I didn’t know how to reach out to her. I thought that was just how our relationship was going to be.
Since training as an Echo Peer Coach with Beat, I have reflected on these memories very differently. It has helped me to understand my sister’s illness, and recognise that the family conflict, and my sister’s withdrawal from us, are common to families affected by eating disorders. Perhaps most importantly, for me, speaking to them has also changed the guilt I had felt about not having a close relationship with my sister when she was unwell. My training has given me the words to understand and speak about what it was like, and to know that (even though it didn’t feel like it at the time) I had a part in caring for my sister too.
This has become even more important recently, because of the COVID-19 pandemic. Even though my sister has been in recovery for nine years, studying at university and working in London during that time, the shock and disruption of the lockdown has affected her significantly. Having to work from home, and being unable to spend time with friends and loved ones, has recreated that experience of isolation that she felt all that time ago. Worrying about vulnerable family members, and feeling scared about what could happen in the city, has heightened the anxiety that my sister worked so hard to overcome. But this time, it has been different, partly because my sister knows the signs and what to do when it feels like things are sliding out of her control. Yet it has been different for me too, because, finally, I have had the confidence to ask about how she is feeling, and the belief that I can do something to support her.
This experience has not been without its ups and downs, just like it hadn’t been before, and I have needed to learn what I can cope with too. Witnessing your loved one’s experiences of mental ill health can be overwhelming and frightening, and it is never a failure to not know what to do. But, what I do know, after all this time, is that there are skills people can share with each other, and common experiences to learn from, that give a person the self-belief they need as a carer. That’s the role I have been training for as an Echo Peer Coach: to be someone to listen and share stories with, someone to acknowledge the hopes and challenges that living with an eating disorder can bring, and ultimately, to reassure those caring for a loved one that they are not alone.
Do you have a sibling with an eating disorder? Echo is a free, confidential service where, through a weekly 30-minute phone call, you can get support from someone who's helped their own sibling through an eating disorder. Learn more about Echo here.