MS Articles

When Jessie woke-up on the last day of university and couldn’t feel her left side, she thought nothing of it. A week later, the GP diagnosed her with a migraine. Soon after, however, she received a telephone call advising her to visit A&E where she was admitted to a stroke ward. After two misdiagnoses and three days of tests, Jessie was told she had MS at the age of 22. 

‘The only time I’d ever been in hospital was to visit my grandma or something like that - I’d never actually been into a hospital for me. So, it was a very, very new and weird experience,’ she remembers, explaining that she can recall the day that she was diagnosed like yesterday. 

After a short stint in hospital, Jessie was told to go home and research the condition for herself.

‘What I found was just shocking, it’s the worst advice you could ever get. Please if you are newly diagnosed, do not go and Google anything!’

As a recent graduate, she was left in limbo with no support from healthcare professionals. Witnessing the overwhelming lists of MS symptoms online and not knowing that the condition affects every patient differently, things took a toll on Jessie’s mental health. 

‘I was angry, I was frustrated, I was so sad…. I was asking myself "what is there now?"’

A switch flicked 4 years later when Jessie realised the power of sharing her own experiences. She noticed that everything online was written by someone much older and further along their diagnosis journey. People needed to hear about a younger person going through MS too! 

Jessie started to write a blog on the National Multiple Sclerosis Society website, which quickly gained traction. She covered topics that weren't addressed by HCPs or medical websites but which everyone needs to know in order to go about their day-to-day lives - things such as parking in a disabled space for the first time and dealing with grief.

It was obvious that the blog was lessening the ‘freak-out’ feeling for many facing a new MS diagnosis. Jessie took this and ran with it, setting up her podcast DISabled to ENabled (despite challenging social anxiety), writing for other charities and creating the first easy-to-use symptom tracker. In all of this, her main aim is to empower. 

‘I have learned so much over the last seven years, I have done everything wrong,’ she admits, acknowledging that her mistakes are what put her in a great position for giving advice on how to live with a chronic condition.

Jessie's top tips

Take it slow: The internet is full of remedies, changes in diet and exercise regimes that are thought to help with symptoms of different chronic illnesses. Jessie explains that you should ease into these changes slowly if you are going to adopt any of them.

‘At a time when things are so uncertain and up in the air, radically changing everything about your diet and what brings you comfort and joy is a really bad idea.’ 

When you are adapting to a new way of living post-diagnosis, ditching old comforts will only make things harder. Give yourself some time to come to terms with what your future might look like before starting to make lifestyle changes that could better your symptoms. 

Prioritise to become self-aware: Getting used to a chronic condition is difficult but it can be made so much easier with a comfortable routine. Instead of trying to complete a to-do list everyday, try an achievements list. By prioritising the most important things you have to get done in a day, you get the good stuff done without being laden with the guilt of not ticking everything off.

This way of setting goals is also useful for becoming more aware of your own energy and capabilities. After getting your first job done, check-in and see if you need to take a rest before continuing with your day. No burn-outs mean better physical and mental health! 

Surround yourself with positivity: Jessie is a strong believer in the importance of surrounding yourself with positive people and loving friends. She says that those who treat you drastically differently post-diagnosis will encourage a victim mentality to take hold. It’s the friends who see past your illness and maintain a normal and positive engagement with your diagnosis that will lift you up and encourage you to live your life to the full.

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If you or anyone you know is living with MS, check out our MS hub and talkhealth's myMS support programme for lots of expert-backed, actionable advice.