Stories of Hope: Rochelle Bugg

“Recovering from the loss of someone you love isn’t one big light-bulb moment. It’s more like lighting a long string of fairy lights.”

This week in ‘Stories of Hope’ we meet author Rochelle Bugg, whose book Handle With Care tells the story of losing her Dad to cancer at the age of 14, then nursing her Mum through a terminal brain tumour. Providing a window into the life of a young carer, the book not only provides a moving and honest account of her own story, but also a powerful guidebook filled with practical and emotional advice for anyone navigating life as a young carer or dealing with the loss of a loved one.

Handle With Care is an incredibly moving account of losing both of your parents at a young age. How did the book come about?

Throughout Mum’s illness and in the years after her death, I was on a quest for answers. I wanted to know why things happened in the way they did and why people coped so differently in the face of caring for a terminally ill loved one. I was always doubting myself, questioning the way I was dealing with things and if they were the ‘right’ way. I started to blog, partly to keep friends and family updated on Mum’s progress, but also as a sanity check and a way to make sense of the events and emotions I was experiencing. That blog became the foundation for the book. When I became a carer, there were no guidelines or instructions for me to follow or check in with when I was struggling.

Mum was initially diagnosed with a ‘mini-stroke’. I was living in Leeds when I got the call from my sister and I immediately jumped on the train to Ipswich, where Mum lived, to be with her. I’ve replayed that journey so many times over the years and wondered what it would have been like if, in some twist of fate, I’d found a book telling the story of someone who had already been through what I was about to go through. There wasn’t a book there for me, but I wanted there to be one for others who went through this after me, so I wrote it.

How has your mental health been affected by your journey?

There was an immediate impact, obviously. Struggling with your mental health after finding out a parent is terminally ill or after they die is a natural and predictable response to a big life event. But I didn’t realise then that the journey after significant trauma lasts a lifetime. These days I am more aware of triggers that can affect my mental health now, like big life events where I know I am going to miss my parents, anniversaries and things like that. When I know they are coming up, I can put things in place to help manage those triggers. Lots of people see mental health as being ‘on’ or ‘off’, ‘good’ or ‘bad’ but there’s more to it than that.

How did you deal with this then, and now?

In the middle of it I was more unprepared. It felt like a battle to get back to ‘normal’ – a problem to solve. After Mum died, I was trying to work out how I could get rid of the grief and get back to how I was before I was a carer. When I couldn’t find the answer, I almost felt like it was my fault, like if I could find the right self-care tools I would be ok – that would fix me. Looking back, I realise I was just trying to get it all out.

I hadn’t realised that grieving is like shaking a bottle of fizzy pop and then trying to open it. You can keep the lid on for as long as you like, but when you do eventually open it, the bubbles are still going to be there. With mourning, it’s best to take off the lid slowly, gently and stopping every now and then to let things out a bit at a time, or it will just explode everywhere.

Now, I have a much better understanding of the way the brain processes traumatic events. Knowing that grief is something that will be there forever makes it easier to deal with. When it’s bad, I know that I have felt like this before and got through it. With more understanding you’re able to rely on past experience to get through dark patches.

What support did you seek during your journey?

At the time, when I was going through it, I tried normal talking therapy and some alternative therapies, but because there was no dramatic difference overnight, I thought they were useless. I was looking for an instant fix.

Later on, I did realise the power of my counsellor witnessing my pain, holding space for my stories and validating my feelings. Having someone mirror back to you what you already know is incredibly powerful.

I found Emotional Freedom Technique (EFT) to be a great emergency technique. It’s also known as ‘tapping’ because you literally ‘tap’ on a set sequence of acupressure points to reduce physical and emotional pain, while talking through a particular issue you are having.

Somatic Experiencing, which focuses on felt senses in the body to overcome shock and trauma and heal the nervous system, helped me enormously, as did Eye Movement Desensitization and Reprocessing (EMDR). In EMDR a practitioner will help you carefully relive traumatic experiences while they either direct your eye movements, or you hold alternating buzzers in your hands, which helps lessen the impact that your traumatic memories have on you.

All of these techniques and therapies helped me to feel better and better understand that what I was experiencing was a neurological process. Realising that my brain was trying to protect me, helped me let go of the feeling I was going crazy.

What barriers did you find to getting mental health support and how did you overcome them? What changes do you think should be made?

When you are struggling with your mental health, everyone tells you to ask for help, as if that act alone will fix things. It underestimates how difficult it is to access that help, especially when waiting lists are so huge. There are practical issues with access too. Often when you do get a call back it is from a withheld number and if you miss them, you can’t call them back.

There also seems to be a lack of thought about why people are accessing the service and making them fit for purpose. I had a car crash just after I started writing the book and my doctor referred me to weekly mindfulness sessions to help me deal with the aftermath.

The initial reason for me going to the doctor was because I was having hemiplegic migraines, which have very similar symptoms to a stroke. Yet for my mental health recovery I was sent to a service that required a 15 minute walk, then two trains and another 20 minute walk to get to the meeting place. When I was struggling with the migraines, I couldn’t do that so in the end I was discharged for poor attendance. So many mental health services make sense on paper, not to the person using the service.

Services are too generic and there’s a real lack of options. I have been in sessions with people battling stress, medical issues, people like me caring for sick relatives or dealing with grief, people with different cultural needs – you can’t just group us all together with such disparate needs and hope to get results.

There are so many changes that could improve mental health care. Through research, I’ve also learned that it isn’t helpful to repeat what you have been through in the same order, over and over again, and that you should dip in and out in a non-sequential manner. But as you’re pushed from pillar to post trying to get support, you have to explain multiple times to multiple different people what happened to you, from start to finish.

Waiting lists need to be shorter and your therapy plan should be based on you and your needs. Therapy should be trauma-informed, the research the NHS is using needs to be updated and the whole process needs to be demystified, so people have less shame about seeking help.

What did you find most useful on your personal mental health journey?

Reading and researching. I actually created a separate Instagram account for myself that only followed people useful to my recovery. I followed lots of accounts from qualified professionals that used a variety of techniques and that helped ideas to sink in about how to approach my mental health. It was a free resource that helped me to identify what type of help would work best for me and then find relevant and well-tailored support locally.

What were the moments of hope for you, on your journey?

Moments of hope when dealing with grief is hard. When you do have moments where you feel happy, at first, you feel guilty. I don’t remember feeling that there were moments of hope, not big significant ones.

But recovering from the loss of someone you love isn’t one big light-bulb moment. It’s more like lighting a long string of fairy lights, one at a time as you put one foot in front of the other and try to keep going. Each of the tiny bulbs don’t seem like much at the time, just a small act of healing that seems insignificant. But then one day, you look back and see them all illuminated together and you realise how much light – how much hope – is in your life again. That’s when you realise you did what felt impossible. That you survived the unsurvivable.

How do you address mental health in your own work now?

I do a lot of talks about my experience, particularly to HR professionals so they can develop systems that allow for people’s whole experience to be accepted, particularly those who are carers or who have experienced loss. A big focus of these talks is resilience, toxic positivity in the workplace – the things that people say to try and be comforting, which can be isolating.

The talks also look at what people who have been carers can bring to the workplace, recognising that someone who has overcome a lot in their personal life will have a host of skills that others don’t, which can be enormously beneficial in the long-term. It can be a real superpower and should be nurtured as such.

I also deliver talks for carers organisations, around self-care and wellbeing, encouraging them to find ways to take time for themselves so they can be a carer without burning out – you can’t pour from an empty cup after all – and encouraging them to embrace and use the skills that being a carer gives to them.

If you, today, could speak to yourself at your lowest point, what would you tell yourself?

I would tell myself to trust your instincts, stop trying to protect everyone else’s feelings when you need help the most. It’s not selfish to look after yourself. It’s not a personal weakness or personality flaw. We all have to charge ourselves up sometimes.

Order Rochelle’s book Handle With Care here

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