I’ve always wanted to use my journey of living in persistent pain to help others

Nikki Ellis, Patient Mentor, Wolverhampton Pain Service, tells us how after not being able to work for 10 years, is honoured to be sharing her experience on the Pain Management Programme

Having lived for 12 years with persistent pain, I’m keen to help make a positive impact on people’s lives

In March 2019, I was asked to take part in the filming of a virtual pain management programme and discovered I knew a lot about it. Having had 12 years of persistent pain and chronic fatigue, I’ve been seen by numerous doctors. I have been mocked and told nothing is wrong with me as I’m too young.

I went through a very dark time and didn’t live my life at all. I was diagnosed with Fibromyalgia and chronic fatigue syndrome and also potentially have a metabolic myopathy.

Then I attended a Pain Management Programme 7 years ago and always remember meeting others that understood what I was going through and they made me realise I wasn’t alone, and that everything I was feeling was normal for someone in my position. It gave me the boost I needed to start making changes. It took me a long time with many ups and downs to get me to the place I am now.

I give others hope, because I understand what they have been through

As a Patient Mentor, I now share my story and run some of the sessions alongside the multi-disciplinary team of clinical psychologists, physiotherapists, and expert patients in Wolverhampton.

I describe the 3 Ps of managing pain – pacing, planning and prioritising. My main role is to offer advice and support. I can relate to what patients are saying and encourage them.

I absolutely love it – it’s changed my life having not worked for 10 years

It came at just the right time after having a lot of trouble with mental health. The role gave me the boost to do something for myself again. Doing something I’m so passionate about has really pushed me to keep going and gaining the respect and support of my team has boosted my confidence. I feel needed. I feel important.

It feels amazing to be helping other people. All patients are different so some changes are more subtle than others. There’s always growth and always a confidence boost. The social aspect is a huge thing.

Just being surrounded by people that understood is one of the biggest things

We see friendships form and the support carries on after the sessions. They stay in touch and support each other. Not only do we see them implementing the strategies we teach, sometimes they don’t even realise they’re doing it which shows they are just absorbing the information and naturally making these changes.

I just love what I’m doing and really appreciate having the opportunity

You are taught from an early age, if you’re ill, you don’t smile and you don’t go out. We want to change that. Your immediate response shouldn’t be to shut yourself off from the world.

I have this motto “I would rather live my life in pain than not live my life at all.

A lady came in the other day crying and just wanted to say thank you. I was just existing for a long time, so I said this to her “you could be sat at home in pain, or be doing something you enjoy, with people you love and still be in pain.”

She came back the following week and explained how she had gone out on Tuesday, Thursday and Friday to see friends – something she hadn’t done for over 12 months.


Download Nikki’s full story here

Find out more about Connect Health’s Patient Services here