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23 March 2022

Our colleague, Paul, shares his story of living with multiple sclerosis (MS)

This month we are celebrating our colleagues and customers with hidden disabilities.
Paul and his friends at an axe throwing class

This month, we have temporarily changed our logo to raise awareness of hidden disabilities. 

Hidden disabilities aren't always obvious or immediately apparent. As a result, the barriers that people with hidden disabilities face are sometimes overlooked. This can make it difficult for people with hidden disabilities to access the support that they need.

This month we have been sharing the stories of our colleagues and customers with hidden disabilities, in order to reflect on and improve the support that we offer.

Paul, who is a member of our Customer Services team, shares his story of being diagnosed with multiple sclerosis (MS) and talks about how he has adapted his lifestyle following his diagnosis.

MS is a lifelong condition that can affect the brain and spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance. 

MS is one of the most common causes of disability in younger adults - it is most commonly diagnosed in people in their 20s and 30s, although it can develop at any age. 

Paul's story:

It’s 2013 and my legs have been sore for days, it’s my first day off in a week and I’m going to have a lazy day chilling at home. I wake up and go downstairs, but I’m struggling to put one foot in front of the other. I go to the toilet, but I can’t feel anything. 

I make an emergency appointment with my GP, who quickly decides to get me an ambulance. After several tests they send me home. They don’t know what’s wrong and at this stage I can barely walk. 

I have several MRI scans, lumbar punctures and blood tests, and over three years later I receive a letter informing me that I have Relapsing Remitting Multiple Sclerosis.  It was a difficult time coming to terms with my diagnosis, losing my job and worrying about paying the mortgage. 

I was told I would never be able to work again, and that I had to make changes to how I lived my life. Further relapses would follow whilst I resisted the change, causing collapses, vision problems and mobility issues.  Some were permanent and some were temporary.  I ignored a warm feeling in my legs for weeks, which ended up in a massive relapse which caused the permanent loss of sensation from the knees down in both legs which remains to this day. 

I decided to embrace the change and adapt my lifestyle to accommodate.   

After suffering frequent relapses, I was offered a twice a year treatment called Ocrevus.  It is an infusion which is given in hospital every six months.  It isn’t very pleasant and makes me feel ropey for a couple of weeks but haven’t had a relapse since.  

Since that morning in July 2013, I have changed careers and joined LiveWest, who for the past five years have been incredibly supportive and understanding, and do everything they can to facilitate my role and accommodate my MS.  I’ve got married, I’ve travelled, and I’ve regained my social life.  With the knowledge that a relapse could cause permanent damage or my MS could progress into Secondary or Primary Progressive at any time, I have chosen to make the most of it and experience everything life has to offer.  

It’s not nice getting that diagnosis and your life will change, but it doesn’t mean that you can’t have a life or a career.