Lucy Phillips was diagnosed with relapsing remitting MS in 2016 – just three months before her wedding day. Here, Lucy talks dealing with loneliness, finding support, and staying positive.
I was diagnosed with MS in April 2016 – three months before my wedding day. I smiled the whole way through my appointment with my neurologist, thanked him for seeing me and left. My partner insisted we talk about it; we stopped in the hospital coffee shop on our way out and I remember him just staring at me. Waiting I guess. Then it hit me, the reaction he was waiting for came.
But strangely enough, as much as the diagnosis was not what I wanted, not for one minute, I felt relieved to finally know what I had been suffering with for the past five years. The numb legs, tingling up and down my arms, the constant fatigue.
I found the next few months extremely overwhelming, the whole process off reading up on medications, choosing the one which would be best suited to me and knowing I could be taking it for the rest of my life.
I slowly began telling people and I was offered more support than I could begin to explain. I have a great support network of family and friends so I am incredibly lucky. But even with all of these amazing people around me, I still found my experience with MS incredibly lonely. As much as people try, they can’t understand. When I forget my words in an MS fog moment, or feel my body completely exhausted and drained, but too tired to even sleep.
It’s made me realise a positive mind set is the most important thing you can have. And even though some days it’s hard, it’s got me through a lot
Earlier this year I started filling out online market research forms, it was great because I even learned things about the condition that I didn’t know before. I was then invited to a group interview in London, and decided to go to find out more about it. I was met by a room of four other women, all had RRMS, all from different walks of life and all on the same treatment.
The hour and a half I spent listening to these women talk about their own experiences living with MS and sharing what they knew about it with me was more than I could ever have imagined. I no longer had that ‘loneliness’ and I knew that all these strange things that were happening to me were kind of normal. I heard the women tell me how they have had families, and live as normal a life as they can.
If I had to give someone in the same situation any advice, I would definitely say find local groups and speak to people who have the condition; see that there is a ‘normal’ life after diagnosis. I would also recommend the MS Trust. I was recommended the MS Trust website by an MS nurse after I was diagnosed and it has been so helpful. I have particularly liked following on social media, and reading other people’s posts and stories.
Being diagnosed with MS has changed my outlook in lots of ways. It’s made me realise a positive mind set is the most important thing you can have. And even though some days it’s hard, it’s got me through a lot. I have a positive outlook on my life now, not everyday, some days the negative or sad thoughts creep in, but I know I still have lots to look forward to in life, lots of new experiences to have and enjoy. And the MS is just tagging along too!
Your MS stories
Read real MS stories about treatments, symptoms and challenges along the way.
Just been diagnosed?
You probably feel emotional and have a lot of questions. What happens next all depends on how active your MS is, what treatments are available and what you would like to happen.
Relationships and family life
Find out how to talk to friends and family about MS as well as questions surrounding new relationships and pregnancy.
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