Navigating life with MS: Zoe’s journey from optic neuritis to finding hope

In 2011, Zoe was in her second year at Swansea University when she started to experience soreness in her eye just a few months before her end-of-year exams. An optician advised her that it was most likely the strain of studying, however, her vision became gradually worse until one day she woke up and couldn’t see anything at all out of one eye. 

A hospital visit confirmed that she had optic neuritis, which occurs when the optic nerve that connects the brain and the eye becomes inflamed. Although there is a strong link between optic neuritis and MS, only 40-50% of those who get optic neuritis will be diagnosed with MS. So at this point in time, MS was mentioned as being linked to optic neuritis but Zoe did not get an MS diagnosis.

Having been referred to a neurologist for a follow-up consultation Zoe was given an eye patch to alleviate the pain and was able to defer her exams due to the continued blindness in one eye. Zoe returned home and remembers “I went back home to be with my family and to see a neurologist at St George’s hospital in London. At this stage, I was offered steroids to help with my eyesight. I decided to decline the steroids as it didn’t feel like the right decision for me at the time.

“I had also planned to go to China over the summer on a teaching internship and desperately wanted to go, as it was a once-in-a-lifetime experience. Despite concerns, I decided to continue with the planned trip and over the course of the summer, my eyesight gradually came back to about 80%. I had such a memorable three months away and was so happy that I didn’t put my life on hold because of my eyesight. I went back to University in September to enjoy my final year with my friends and boyfriend, who is now my husband. I put off going back to my GP because I just wanted to be a carefree student like everyone else and enjoy my time at Uni.

“Four years later in 2015 when I was working at Sweaty Betty, I was chatting about my optic neuritis with a colleague, who herself has MS. She was young, fit and healthy, which made the conversation with her so easy. Over a drink, we talked about what I had experienced with my eyesight and she said that I probably had MS and should go back for further tests. I knew deep down that I had been avoiding getting to the bottom of the optic neuritis and after going back to the GP, having an MRI scan and seeing a neurologist, it was confirmed that I had MS.

“To be honest it was upsetting but not a total shock. The hardest thing was seeing my family, partner and close friends so worried about me. You can manage how you feel yourself but it’s out of your control to manage the shock other people feel and I found that the most difficult.”

After the diagnosis, Zoe did lots of research and changed her diet and exercise habits. She was already a vegetarian, but after the diagnosis, she took her diet more seriously, cut out most junk food, exercised more and recognised that if she could be healthier than she had ever been before, maybe even healthier than some people without MS, her outcomes would only improve.

Although Zoe experienced some MS symptoms such as fatigue, brain fog and temperature control she hadn’t suffered any relapses since the optic neuritis. 

Zoe found her role as a Digital Product Manager at Overcoming MS, which was her first interaction with the charity when she was on maternity leave. In October 2022 she had a relapse which she believes was due to the strain of the big change from pregnancy and maternity leave to starting work. She experienced numbness in the side of her face and was advised to start a programme of medication. Her role with the charity is proving to be a huge source of support and hope as she chooses her course of medication.

She says, “I’m so grateful that I have this role at Overcoming MS where people truly understand what I’m going through. I am part of a community of people who care and understand, have an optimistic outlook despite their MS diagnosis and are focused on well-being. I have started implementing the Overcoming MS program and feel like I have a wealth of useful information at my fingertips. There is a huge amount of hope and positivity around me. MS is normalised in my working environment and I don’t feel as scared about my future with MS.”

Of the Hope Reborn project and video Zoe comments, “Hope Reborn carries some really important messages as well as a lot of hope. MS is an invisible illness for many people and in the scenes when Rose Leslie’s character is in the supermarket, on the tube and out with her friends, she doesn’t appear to be any different to anyone else. It is a reminder that it’s so easy to see someone and assume they are healthy, but people should never assume that what is happening on the surface is reality. Equally, people living with MS don’t want to be looked at differently because of their condition, it’s about giving support and understanding that everyone is experiencing a different journey with their MS. Practically and emotionally, some people are making difficult decisions and dealing with a wealth of things that you just can’t see on the surface, and the video brings this to life in a really powerful way. Hope is so important for those of us living with MS and Rose’s character shows the ups and downs of living with MS.”

Zoe’s final message is, “MS is not a condition that defines me and everyone’s journey with MS is different. Even though an MS diagnosis can feel overwhelming, it’s important to never give up hope – hope and optimism are so important.”