Time To Talk About Chronic Illness And Mental Health

Today is Time to Talk day – a day to start conversations about mental health

I want to start a conversation about mental health and chronic illness. How the two often go hand in hand. Also to share a few things that help me to self manage my persistent pain, anxiety and keep my wellbeing levels on an even keel (well most of the time!) So what better way than to write a blog post? Writing definitely helps me to increase my feel-good chemicals as it is extremely cathartic making sense of what is going on inside! If this post resonates with you join in the conversation…

The Facts about mental health and chronic illness

More than 15 million people – 30 percent of the UK population – live with one or more long-term conditions according to the Department of Health (2011) and more than 4 million also have a mental health problem. Evidence demonstrates those with a long-term condition are two or three times more likely to develop mental ill-health. People two or more long-term conditions are seven times more likely to experience depression than those without a long-term condition

World Health Survey 2007

Research evidence consistently demonstrates that people with long-term conditions are two to three times more likely to experience mental health problems than the general

The Kings Fund

It’s all in your head

When I was diagnosed with Tarlov Cyst Disease and ME/CFS my mental health wasn’t spoken about. However, pre-diagnosis it was – I had a lot of medical professionals tell me that my symptoms were due to my anxiety and that there was nothing physically wrong with me. They put my symptoms down to my Dad passing away. But I knew that there was more to it so I refused the meds persisted and finally managed to find a specialist who confirmed my suspicions. But once I had been given my labels my mental health wasn’t spoken about.

I am more than my mri

I am more than my MRI doodle

After having open back surgery to sort out the pesky Tarlov Cysts my nerves went into shock and certain parts of me refused to work. The consultant on the ward seemed to think it was because of the morphine. But I was adamant it was more than that. So I pushed to find out what was going on before they discharged me. I was sent for a scan. The MRI results showed the operation was a success.

However, I didn’t feel the same way – I felt I was being sent home broken, I was worried in case this would be permanent. Looking at the specialist with tears in my eyes I remember saying

“I am more than my MRI. I am a person, someone who has a partner and children and I am worried about my body not working properly” It was like a light switched on in his eyes. He stopped being a doctor on his rounds and started to empathise with my feelings. Now I am not taking anything away from him as a professional. I wanted him to realise that it is a struggle to return to normal after having surgery. I wanted him to know that I had been struggling with my mental health since becoming poorly.

stages of grief

The Grief Cycle illustration

Living in limbo land waiting for tests really wreaks havoc on your mental health. Then when you are diagnosed it sends your mental health into turmoil! What I have found out is that you go through the grieving process. Once this was explained to me I found it easier to understand how I was feeling. I was able to get support from a counsellor and start conversations with my family. I started to find peace within myself. However, it is still a struggle to keep everything on an even keel.

Things that have helped me

I wanted this post to be proactive and to offer some tried and tested suggestions that have helped me to self manage my anxiety, pain and mood. So here goes…

Get Creative

  • Doodling – use whatever you have, old magazines, paper, card, pens, pencils…just put pen to paper and start making shapes and patterns. If you need some inspo there are some fab tutorials on Youtube, Skillshare, Pinterest.
  • Making gifts and cards for others – explore different options, for me I liked drawing things for people and making banners. You get a dose of feel-good chemicals while creating. Then another helping when you give your gift. Win-win!
  • Flare Survival Kit – travelling and going out can cause both my anxiety and pain to flare so I try and take with me things that can help keep me calm and distract my pain. Pens, sketchpad, a mini sewing kit for creating Feel Good banners (see below for examples). A charger for my phone so it doesn’t run out of charge! so I can access apps and youtube if needed.
  • Writing – I find writing therapeutic, especially when it helps me to think about ways I can combat the stress of chronic illness or ways I can stay positive. It helps me to refocus on where I should be spending my time and energy.

Get Moving

  • Swimming – when your body doesnt work the way it used to and you struglle to do simple movements a trip to the pool is really worth it. Even if you have no energy you can still float or just walk through the water gently.
  • Wild swimming on the days when I have more energy my sister encourages me to go wild swimming. It has proven benefits for mental health. If you want some support then join the Swim and Tonic Facebook group or have a look at their blog.
  • Stretching was another tool I learnt to master at rehab. Even on the days, I feel crap, a good stretch helps me to readjust myself and gets my endorphins pumping again. This definitely helps improve my mood.

Learn to relax

  • Mindfulness/mediation– having persistent pain, pins and needles and numbness for the majority of the day can really f*** up your wellbeing levels and cause anxiety to rear its ugly head. I have different videos, recordings, apps that help me to tune in which helps my brain to refocus.
  • Breathing yes, yes I am aware we all do this but more often than not we don’t breathe correctly. Breathing intentionally can help when anxiety and pain strikes. I have a playlist of different breathing techniques I can tap into.

Change your mindset

  • I learnt how to goal set on the active back – pain rehabilitation course at RNOH Stanmore. It has really helped me to focus on the things that are important to my wellbeing. My goals include deep breathing when I feel pain, pacing my work and making sure I take regular breaks and change positions. I also have some longer-term goals on there that help me to
  • Focusing on the things you can do this was a game changer for me. I had been caught in a vicious circle of only focusing on the things I could no longer do. I had lost track of the things I could do that would make me feel good. Gathering people together, walking, getting creative were things I could do so I used this to my advantage. By focusing on these I was able to start the Feel Good Community.

Time to talk

Mental health problems affect one in four of us, yet people are still afraid to talk about it. Time to Talk Day encourages everyone to talk about mental health.
This year’s Time to Talk Day is all about bringing together the right ingredients, to have a conversation about mental health. Whether that’s tea, biscuits and close friends or a room full of people challenging mental health stigma, we want you to get talking.
However you do it, make sure you have a conversation about mental health this Time to Talk Day.

Time To Talk Day by Time To Change

Over to you…

Do you agree there is a link between chronic illness and mental health? Have you experienced anxiety, depression, etc caused by your having chronic illness or medically unexplained sypmtoms? Do you have any suggestions for people to try? If yes then pop your thoughts in the comments below and let’s start a converstion!

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