29th July 2021 Blog

Anger & chronic diagnosis: “An anger I hadn’t experienced before”

Anxiety • COVID-19 • Young people •

Stuart is a member of the McPin Young People’s Network and a part of the Young People’s Advisory Group which works on the Keep Cool project, exploring ways young people can cope with difficult emotions throughout COVID-19. This blog has been written in conjunction with the third Keep Cool video, which looks at anger.

“I think it’s interstitial cystitis” – this was the conclusion the urologist came to after multiple biopsies and other uncomfortable bladder examination procedures. Interstitial cystitis is a chronic, painful and poorly understood bladder condition.

As I walked back home after leaving the clinic, so many questions were running through my head; why me? How did this happen? What does this mean for my life, uni, work? I was filled with emotion that I didn’t really understand. As I was learning, chronic and other physical diagnosis can be really impactful on your mental health.

One emotion took hold…

When the questions died down and I had finally come to terms with the diagnosis, in came a flood of something else – anger. An anger I had not experienced before – not an outburst but an internal, lingering anger. I did not realise it at the time, but this is something I would have to learn to live with.

My experience is particularly relevant right now, as large numbers of young people are being told that they have contracted long COVID. If you have recently been diagnosed with long COVID you might relate to some of the emotions I felt or questions I had when I first got my diagnosis. This is normal. You might find it difficult to talk about your emotions, especially anger, because it might be perceived as being ‘ungrateful’ because some people have lost more. But your anger is valid.

I am sharing my story about dealing with anger following a diagnosis because I would have benefited from a blog like this when I was 17 and consumed by this emotion.

The Anger film by the Keep Cool team

Stuck between a rock and hard place

After the diagnosis, my anger was directed at everyone and everything. To make matters worse, a lot of the remedies for coping with anger which I was familiar with – like walking, running, boxing or swimming – were not available to me because my bladder would flare up painfully, or I would just simply get tired of doing these energy consuming activities.

This is particularly applicable to people with long-COVID, who can experience extreme fatigue or shortness of breath.

Uncertainty over being open

I had a hard time admitting my anger to others. During the multiple follow up appointments with a clinician, when asked how I was feeling I would say everything except the fact that I was angry. I had a fear of expressing my anger as it might have been viewed as aggression and hindered my care.

I am a young black man and as much as I have been privileged to be in spaces where I have not felt like the colour of my skin hindered my chances, I am aware of the stereotypes associated with young men who look like me. I had hoped that they would ‘just know’ that I was feeling angry, but this was not the case.

Exploring ways to manage

When I realised that I needed a more sustainable anger management strategy, I approached university counselling services. I was advised to try writing about my thoughts and feelings, including what might be triggering my anger. Whilst difficult at first – rewriting felt like reliving – this later became a good coping mechanism. It allowed me to appreciate my growth and how I had made it through rough days.

For my physical pain, I had been introduced to a number scale from 1 – 10. I decided to take this method and use it to manage my anger by working out which level of anger was acceptable and I could function on, and which levels would make me feel like lashing out. I use this scale to tell my support system – friends, family, and health professionals – how I am feeling both physically and emotionally. This has been beneficial for my self-awareness and removed the stigma around talking about anger.

Where I am today – taking positives from pain

Fast forward a few years. I have met some people with experiences like mine. We are all a bit angry at health professionals, friends or family after a diagnosis. But we feel safe talking about our anger – venting – to each other.

Venting allowed me to bring my anger to the table and speak openly about it in a healthy way. I got into advocacy to share my story and help other people who might have trouble coming to terms with a life changing diagnosis.

If you have recently received a diagnosis, have you tried to find support groups (virtual or in person)? Typing something like ‘Long-COVID19 support group’ on social media will show private and public support groups for people experiencing similar symptoms. There is usually no rush to post anything in these groups and the sense of belonging can be comforting.

I am still angry but now I remain near the lower figures of the 1-10 scale. I have found alternative coping methods – talking about my anger, writing blogs, leading support groups, and pacing myself. I emphasise the need for one to ‘pace themselves’ because this blog summarises experiences over a few years – be kind to yourself and find what works for you.

If you have recently received a diagnosis and feel angry, when you are ready try to explore different ways to cope to find the right one for you, find a friend to confide in, a support group or speak to your health professional about how you really feel. It really can make a difference.

See the Keep Cool project