Expert by Experience

not a service user

Expert by experience

I have never liked the term ‘Service User’. Would I rather be called a ‘Client’ or a ‘Patient’? No I don’t like them either. I think the term ‘Co Worker’ is okay but not perfect. I do like the idea of Expert by Experience. It is a positive description.

In the video just below I am an Expert by experience to the social work students at Brunel University.

Expert by Experience

The person who commissioned the video used the phrase ‘Experts by Experience’. I like it so I use it to describe me.

I was diagnosed with multiple sclerosis (MS) in 1995 but I managed to keep working as an independent computer consultant until 2012 when medical retirement was the only option.

Becoming an expert

I am continually learning to live with the disease MS and everything it throws at me. Over the years it has morphed from a mild irritant into something that now dominates my life.

I would so love to be able to pick MS up and throw it away into the nearest bin. Turn my current normal into pre-MS normal. That would be pre 1979.

No, that can ever be an option. 🙁

I’m stuck with it for the rest of my life.

Another expert

I suggested the idea of Expert by Experience to Barbara from Stumbling in Flats. She liked it as well. So that’s two of us and I’m sure there are plenty more.

Once upon a time

MS entered my life in 1972 but it was not diagnosed for another 22 years In those far off days it did not have an impact on my life. To be honest it did not effect on my daily life until about 2000. It has now been a part of my life for far too long.

So an MS-free life is unimaginable.  Instead look through the glass the other way. I have had many years living with MS. This has given me time to develop my knowledge and become an Expert by Experience of living with MS.

The biggest changes happened after 2012 when I took medical retirement. That was the year when I had to man-up and admit that I had multiple sclerosis. I am now a fully signed-up member of the physically disabled person club.

Suddenly burying my head in the sand was not an option. From that moment onward I had to tell myself ‘I am disabled’. It is not the end of the world. An inevitable consequence is I am unable to work so I am now reliant upon government benefits. Driving has not been an option since 2005

I now have a new and exciting life

My life is totally different to what I had done before. I do have grey hairs and I am possibly the wrong side of 60 but I am still learning.

So now you have the reason why I like to be known as an Expert by Experience. Is there a career path for me. Patricks talks on being an Expert by Experience?

This video is part of a series. Click here to view.

September 2017

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