If you could take yourself back to the day of your diagnosis and look at how much life has changed since you received the news, how would you feel? One of our readers has done just that. Reader Siobhan Fennell reflects on the diary she wrote when she was first diagnosed with MS.
May 1999, Derby Hospital
Dear Diary,
Part of me has been wanting to write for what seems an age. But there’s a pressing voice that tells me to avoid the self-indulgence. Then there’s a small voice that urges contemplation and reflection; ultimately it can only lead to sorrowful self-involvement.
“Why now? Why me?” Others have asked the same questions and found strength in revealing thoughts, events and actions that have carried them through their journey. Perhaps they’ll inspire others, console them, make them feel less alone?
But this is my journey. My crisis. My soliloquy on the stage of life.
As immediate as the process of self-reflection is the self-pity. The practical mind draws future 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.
Why now? Why me? Why my lover and daughter? Do we have the strength? Can they handle it? When will the good intentions wear off? Sex appeal in a wheelchair? I don’t think so!
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 shame. Where are my answers? They don’t lie in these pages.
June 1999, Derby Hospital
Dear Diary,
Ask me how I’m feeling. I dare you – no-one else is.
How are you? The physical side is easy to listen to. Or maybe I’m too worried to tell you the other half. How I really am.
If I really think about it, I’m terrified. I’m scared of losing my mobility, my speech, my dignity. I’m not allowed to say it, but I don’t want to live if or when that happens to me.
I don’t want to think about it. Yet I think about it all the time.
My legs are slow and heavy and I wobble, so I laugh. My tummy hurts all the time. I want to run and dance and walk without falling over. I want to be me. I want to be confident, I want to be sexy, and I want my body back.
How am I feeling? I’m not me anymore, but no-one else knows that. No-one’s asked how I’m REALLY feeling. Now I’m crying. Feeling sorry for myself. Indulging myself. Now I have to go back to not giving a flying f**k.
September 2025, at home
Dear Diary,
I’m writing this as a response to all those questions I’ve just found in a diary from 1999. My diagnosis then felt like the final curtain of a play.
I’d only ever known one other person who lived with MS. She had died at 46. With any luck, I thought I might have a good innings left. I was only 30.
I’m now 56. I am still here. It’s been 27 years of a long, slow journey, and I now live with no movement from the neck down.
Over the years, I indulged my fears and fantasies as though they were mine alone. But I have never been alone. Others have worries of their own and, along the way, I have simply added to them.
I always feel like a burden to the people around me. I know they’re filled with love, and I’m cushioned by their support. 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.” She was right.
It has felt like a long journey, but I’ve never been by myself: someone has always had a tight hold of my hand. I was supported physically, mentally and financially by a loving husband. MS doesn’t just affect individuals: it becomes a member of the family.
Each relapse was a mortality check. Each stay in hospital brought relief that my husband could take a break, and I would be looked after by someone else.
Then came the nighttime. Leaving this life behind filled my mind. No longer a burden to anyone, those closest to me would also be free. It’s only lately I’ve realised that the hand that holds mine doesn’t want to be empty.
The last 27 years have been filled with high points and some very low days. My MS Nurse told me: “There will always be something to look forward to.” She was right. Memories fill my vision and I see all I would have missed.
Life didn’t end when I was diagnosed. I decided to make the most of it.
Battles are fought by every person. Some are won and left behind. Others stay and affect how individuals live their lives. Ruth Bader-Ginsberg said: “Fight for the things you care about, but do it in a way that will lead others to join you.” So that’s what I’ve tried to do.
I am most proud of the fact I have friends and I’m surrounded with love and care. I’m 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. All is silence.
About Siobhan
Since her MS diagnosis in 1999, Siobhan has launched an accessibility organisation in her hometown, won the British Empire Medal and British Citizen Award for her community work, founded a social enterprise and community transport scheme, and gained a postgraduate diploma, amongst other achievements. She’s also had some incredible experiences, including indoor skydiving, going on a hot air balloon ride, and hang gliding, as well as visiting locations across the UK and further afield such as America, Norway, France, and Spain.