Siobhan Fennell’s deeply personal journey is shared through her own diary entries, written around and beyond her multiple sclerosis (MS) diagnosis. Through unfiltered reflection and later insight, her words explore fear, identity, love, and resilience, offering an intimate portrait of how one woman makes sense of life, illness, and self over time.
My MS diagnosis: May 1999, Derby Hospital
Dear Diary,
A part of me has been wanting to write for what seems an age. Yet, there is a pressing voice that tells me to avoid the self-indulgence. No longer a teenager surrounded by the glow of self-importance to invest my time, tears and joys in the pages of a diary, never to be revealed to the eyes and minds of others.
Then there is that still small voice that I cannot allow to strengthen. It urges contemplation and reflection. It encourages deep thought, counselling and revelation, ultimately, it can only lead to sorrowful self-involvement.
“Why now? Why me?“ Others have asked the same question and found strength in revealing the sequence of thoughts, events and actions that have carried them through their journey. Perhaps, they will inspire others, console them, make them feel less alone?
But this is my journey. This is my crisis. This is my soliloquy on the stage of life. As immediate as the process of self-reflection is, the self-pity. Is there a place for this indulgence?
“Yes”, say a sea of faceless voices. But still, that stronger, pressing voice speaks louder. “No. For therein lies the path to weakness, the route to surrender and the ultimate journey to self-destruction “
Even recording the contrasting elements of a bemused and thwarted persona is an anathema. Years have gone by without the desire to put pen to paper and lay the evidence of life’s daily dreams. Is this such an event that all should be reversed? A life-changing condition, to consume a lifestyle and reverse the decision about an autobiographical account.
Or is it the mediocre being ill-proportioned, to draw attention, become centre stage, take a starring role for once in life’s festival of theatre?
Confusion and chaos riot. The practical mind draws plans for the mundane, the trivial, for survival. The darkness of night makes its entrance, and the plans are less clear and fade into obscurity. Reflection and morosity strengthen and take hold until the light of day forces the strength to face another cycle.
Far too many thoughts to record. Is it worth the lead and the papyrus in such unanswered ambivalence?
Why now? Why me? Why my lover and daughter? Do we have the strength? Do they want this? Can they handle it? When will the good intentions wear off? Sex appeal in a wheelchair? I don’t think so!
I haven’t got the time to change my life. Fuck it, I don’t want to change my life! I don’t want to saddle my loved ones with a cripple. I don’t think I can survive this without them, but I can’t watch their sorrow and their shame. Where are my answers? They don’t lie in these pages.
The fear of MS: June 1999, Derby Hospital
Dear Diary
Ask me how I’m feeling? In some ways, I dare you, ‘cos no one is. How are you? The physical side is so easy to listen to. Or maybe I’m just too worried to tell you the other half. How I really am.
I’m scared. That’s how I am. If I really think about it, I’m terrified. I’m scared of losing my mobility, of losing my speech, of losing my dignity. I’m not allowed to say it, but I don’t want to live if/ when that happens to me.
So that’s how I really am. I don’t want to think about it. Yet, I think about it all the time. I know it ‘cos my legs are slow and heavy and I wobble, so I laugh. I know it ‘cos my tummy hurts all the time. I know it ‘cos I want to run and dance and walk somewhere without falling over. I want to be me. I know it ‘cos I want to be confident, I want to be sexy, and I want my body back.
How am I feeling? I’m an immobile slob who needs to lose weight but who wants as much pleasure out of life, while I can. Where’s the motivation not to eat in that one? And who cares? I do!
I’m not me anymore, but no one else knows that. No one’s asked how I’m REALLY feeling.
Now I’m crying. Now I’m sorry for myself. Now I’m indulging myself. Now I have to go back to not giving a flying fuck.
Responding to my past self: September 2025
Dear Diary,
I am writing this as a response to all those questions I have just found in a diary from 1999. This was written in hospital, when I had just been diagnosed with multiple sclerosis (MS). Oh, how dark and cruel the world seemed! I was totally saturated with fear of the unknown. I was allowing that unknown rule over me and the long journey I had ahead. It felt like the Final Curtain of a play. There was only loss and emptiness.
I had only ever known one other person who lived with MS. She had died at the age of 46. I thought that with any luck, I might still have a good innings left. I was only 30. I am now 56, and though there have been many dark days and long, seemingly endless nights, I am still here.
Over the years, I am sure I have caused worry and heartache. I wasn’t the only one with questions about why I was chosen. I don’t think I ever realised that and indulged all my fears and fantasies as though they were mine, alone. So, as I write, it’s important to remember that I have never been alone. Others have worries of their own, and along the way, I have simply added to them.
I am not sure how I lived in a previous life. However, I think I must have done something good because I know that I would have given up many years ago. I always feel like a burden to the people around me. I know they are filled with love, and I am cushioned by their support. My daughter has lived with the MS shadow throughout her life and claims the spotlight as her own, now that she treads the boards as a star in her own show.
As a teenager, I loved a song with the line “I am a rock, I am an island”. That was how I wanted to live my life. No reliance on anyone but Mum said, “No man is an island,” and she was right. Throughout my life, I have needed people. This began long before my MS diagnosis. I feel that having other people in my life is a learning tool.
That is why, when I am alone, I feel loneliness. Hence, it has felt like a long journey, but I have never been by myself, and someone has always had a tight hold of my hand.
With this entry, I hope to answer some of my own questions. There were quite a few! I felt I was speaking, and my only reply was silence. There was no doubt about it. Each relapse was a mortality check. Each stay in hospital was a relief that my husband could take a break, and I would be looked after by someone else.
Then came the nighttime, and leaving this life behind filled my mind. A peaceful thought to help me sleep! No longer a burden to anyone. Simply living a free life that was meant for me. This would mean those closest to me would also be free. It’s only lately that I have realised that the hand that holds mine doesn’t want to be empty.
The last 26 years have been saturated with high points and what felt like some very low days. This is reflected in many people’s lives, and when I am low, I have to remember that fact. I was told at the age of 13 that I had no right to be depressed. That has always stayed with me, and I recognise how lucky I am. It’s just that when there are so many things to do, and my body won’t work at all, luck feels like it may have passed me by on its way somewhere else.
However, my MS Nurse told me that “There will always be something to look forward to or something to aim for” She was right. Scenes from my memory fill my vision, and I see all that I would have missed. I have been so lucky. Stephen Hawking (disabled and brilliant) said that “The human race is so puny compared to the universe, that being disabled is not of much cosmic significance “. Life didn’t end when I was diagnosed. I decided to make the most of it.
This is not a guide for everyone diagnosed with MS. I was supported physically, mentally and financially by a loving husband (who works full time). MS doesn’t just affect individuals. It becomes a member of the family.
Each person is different. Each day, minute and hour bestows a new outlook. I have heard that some people with MS have very little disability. Consequently, even the MS community may have people who don’t understand me. There will also be people there who live with the fear of becoming as disabled as I am. It’s been 27 years of a long, slow journey, and I now live with no movement from the neck down. I can’t even shake my fist at an audience that doesn’t really care.
Contradictions fill my head, and I have to wonder how much of this frustration can be laid at the door of my MS? There is such a pantheon of thoughts and experiences throughout life, and there are times when the disease and its effects can be ignored. Not many, it is a part of me that everyone sees, but I am the person whose life it now dictates.
Battles are fought by every person. Some are won and left behind. Others stay and affect how individuals live all their lives. These battles lend experience and affect the course of world history. Mine is not one of significance unless I make it so. Even this cannot be done alone, but my axis of support is reliable. Ruth Bader-Ginsburg once said, “Fight for the things you care about, but do it in a way that will lead others to join you “. So that is what I have tried to do.
I am most proud of the fact that I have friends and that I am surrounded by love and care. I am selfish and self-obsessed, and my battles are built upon my own experiences. However, I can only apologise so much. The truth is boring, but it is mine. If I have done it wrong, tell me when I’m dead.
The Safety Curtain comes down, and all is silent.
Making the most of life post MS diagnosis
Following my MS diagnosis, I made a conscious decision that my life would be defined not by limitation, but by purpose, creativity, and impact.
I founded and now chair Accessible Belper, an innovative organisation promoting accessibility for all through advice, training, and an engaging social media presence, which led to Belper being awarded Most Accessible Town in Derbyshire in 2016.
My community work has been recognised nationally, including receiving a British Empire Medal in 2019 and a British Citizen Award the same year, alongside being honoured as one of the 25 most Inspirational Women in the UK with a commemorative statue during World Heritage Open Days in 2018.
I was also proud to win the Derbyshire award for Outstanding Contribution and Commitment to Community and Community Arts in 2017. Alongside this, I founded the social enterprise Prescribed Poetry, creating personalised poetry to raise funds for charity, serving as a trustee and trainer for Disability Derbyshire, and bringing over twelve years of experience as a school governor. In 2025, I jointly founded Belper Community Transport.
I have continued to grow personally, gaining qualifications in equality, diversity, and creative writing, embracing new adventures like skydiving and ballooning, and travelling widely across the UK and abroad, proving to myself that life after diagnosis can be rich, bold, and deeply meaningful.
If Siobhan’s words resonate with you, you are not alone. Many people living with MS or other life-changing diagnoses carry similar fears, questions, and moments of quiet courage. We invite you to share your own experiences, reflections, or diary moments—whether from the beginning of your journey or years along the path. Tell us your tales in the comments box, on social media or contact us to share your personal story.