My sister, my anxiety

by Kate Carroll

On Monday 13th May, Day 1 of Mental Health Awareness Week, my friend Deb Broddle and I launched Nisa’s week-long programme of activities to mark the week and to fundraise for the local Children and Adolescent Mental Health Service (CAMHS) inpatient unit being built in Hull to support families in the wider Hull area.

We’ve both recently had quite a tough time, and without discussing it with each other, we both decided to speak very openly to our colleagues about our own mental health challenges. My beloved sister was diagnosed with a terminal brain tumour in August 2018. After many panics and hospital visits on this rollercoaster in Hell, she is now close to the end of life. 

Living with a loved one with a terminal illness has had a huge impact on my mental health.  As soon as you receive a terminal diagnosis, you begin to grieve. You feel sad for all the things you won’t be able to do. Then the worry sets in. What will happen to… (fill in the blank yourself, many words fit here).

Jayne started a gruelling course of chemotherapy and radiotherapy in September 2018. She was so determined to overcome it, and I was so determined to support her every step of the way.  Ever since her diagnosis we’ve both struggled with insomnia. Falling asleep was no problem; staying asleep was a different matter. We had regular text conversations at 2am. One morning she replied from Castle Hill’s cancer ward. She’d been admitted because she ‘didn’t feel right’.

Yet another MRI later, the consultant confirmed our worst fear; the tumour had spread to the other hemisphere of her brain and was now inoperable. Watching her receive this news was awful. She took it with strength and dignity whilst we all fell apart. That’s when I started taking anti-depressants. I know they’re not for everybody, but they’ve certainly helped me. They help me feel like I can cope so that’s a good thing. 

That was a short hospital stay at just two days. A week later I received a teary phone call whilst at work; Jayne had had a seizure on her way to radiotherapy and was laid on a bed in a waiting room. It’s quite amazing how quickly you can get from Nisa HQ to Castle Hill. Nothing prepared me for what met me when I got there. She looked like she was dying, head rolling around, eyes rolling back in her head and didn’t have a clue who we were. I kept asking doctors if she was dying. Nobody said no, they just kept telling me she’s really ill. As if I didn’t know. That’s when my anxiety started, I could feel my chest getting tighter and tighter and the longer I sat there, the harder it was to breathe. 

Having seizures from radiotherapy for brain cancer is apparently common. She stayed in hospital for almost a week. I sat with her every day and went with her for the radiotherapy sessions. I helped her onto the bed, held her hand whilst her head was fastened to the table with the mask, then had to leave whilst they did the treatment. They let me watch on the monitors with them as they could see how anxious I was. It was half my own terror and claustrophobia, and half the terror of watching it being done to her.

After that I started noticing that other things were happening to me. I was getting really forgetful. The insomnia carried on, so I put my forgetfulness down to extreme tiredness. I started to struggle to make decisions, even quite simple ones, feeling I needed constant reassurance from either my team or my boss. Why? This wasn’t me at all.

I felt I had permanent butterflies, my insides were moving too fast, everything was going too fast, and I often felt dizzy. Then insult to injury when I couldn’t sleep anyway, I developed tinnitus. Lying awake hour after hour, night after night led to such panic. Feelings like ‘I have to sleep, I need to get up in three hours’, everything in the middle of the night is far, far worse – irrational in fact. Naturally I’d always drop off around 5am, so my 6.30 alarm woke me with such a panic that I couldn’t come down from. 

I went to see my doctor with a long list. He explained that my body had gone into permanent fight or flight mode. I’m preparing myself for something really awful that’s about to happen. I asked if I will ever be ‘normal’ again, will my memory ever come back? He said of course, once this very stressful period in my life is over. He gave me Beta Blockers to calm anxiety. Again, I know it’s not for everybody, but they really help me. They’re like a comfort blanket. I don’t even take them, but I know I can if I need to!

I have some really bad days at work. My affected memory being one of the worst things, especially in meetings. I have really tough (unkind even) conversations with myself in my own head. “Say something! Anything! People are looking at you!!! Speak!!!!  Anything, just speak!” Words completely leave me. But this brings on incredible panic, fear of looking so foolish and then a ridiculous hot flush. 

You wouldn’t speak to anybody else like that, yet I continually speak to myself like that. Why are we the hardest on ourselves? 

This then brings out the dreaded Impostor Syndrome *. How on earth did I reach this position?! I’m useless, how can my Trustees trust me to lead their charity?! I don’t know anything at all – about anything at all! How can my team expect me to make decisions?! I couldn’t lead my way out of the building sometimes and I can’t even decide what I want on Friday’s breakfast order! 

I decided to be completely honest at work; speaking out about my struggles is the best thing I’ve ever done. When I told my team I was struggling, their first reaction was to ask what they could do to help! They were so kind it instantly put me at ease. I told my boss and Nisa’s HR team. Honestly, what wonderful people I work with. I’ve had such tremendous support that’s made me feel more ‘normal’. 

I’m reassured that everything I’m experiencing is completely normal and usual for anybody affected by anxiety. After Deb and I spoke out on Monday, many colleagues have stopped me in corridors or emailed me to thank me for speaking out. It turns out I’m not alone – in fact, I’m far from it.

My advice to anybody else who is struggling is to confide in somebody. Not everybody will feel as comfortable about being as open as I have been, but I know that telling people has helped me. Now, when I have those overwhelming panics because I can’t remember a word, people understand! They know I’m having a hard time, and that’s ok. 

My colleagues and friends have been my cheerleaders. The days that I’ve driven into work in tears, I’m met with a cuddle and a brew.  Jayne will get poorlier, then die. I know my mental health will suffer more, but I also know that I have the support I need and I’d really encourage everybody else who is struggling to try to do the same.

A huge thank you from the bottom of my heart to my amazing squad of cheerleaders. You know who you are. 

I know it’s ok not to be ok. And I know I wouldn’t be ok without you. 

*Read my wonderful friend, Mandy Johnson’s, brilliant article on Impostor Syndrome.

This blog was originally posted on LinkedIn on 17th May 2019 but has been published on GreatCharitySpeakers.com with the author’s permission.

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