World MS Day More Stories Campaign

Dear letter reader, 

I may be a stranger to you, but I understand what you might be going through. The physical challenges, the mental fog, the battery of tests, the looming uncertainty. It's a lot to grapple with. Trying to maintain your routine, focusing on college assignments, pursuing your career goals—all while hoping for negative test results. Until that day, that final clinic appointment, hearing the words “Yes, you do have Multiple Sclerosis.”

I am writing this letter specifically for you - the twenty something year old student. The thirty year old young professional. The person looking to buy your first home, settle down to plan out your family and future. Your dreams and aspirations may feel like they're slipping away, as though someone has snatched your future with those few damning words, "Yes, you do have Multiple Sclerosis." I recall it vividly: the breath escaping your body, the dread of what lies ahead.

I'm writing to restore your hope, to alleviate some of your fears. Yes, multiple sclerosis can be a life-altering diagnosis, but it need not dictate your life entirely.  I am lucky to lead a largely normal life despite MS. Initially, I grappled with sensory and physical challenges, but over the past four years, I've remained symptom-free.

Since my diagnosis, with the support of my loved ones and a therapist, I've come to terms with my MS. I decided not to let it define or control me. For the sake of my family and my child, I committed to self-care. This determination led me to embrace more physical activity, prioritise gym sessions, adopt healthier eating habits, and carve out time for self-care.

When I heard that I had MS, my first thought was, my life is over and I would one day end up in a wheelchair. Looking back on it now, it seems so ludicrous to me but at the time that’s all my irrational mind could imagine. But here I am thirty six and fitter than before my diagnosis. 

If I could give anyone currently going through a diagnosis or newly diagnosed a piece of advice it would be this: Don’t jump to conclusions. Wait and see what happens. Reach out to people, speak to people, engage in therapy if you are open to it and engage with reliable information to learn more about MS. 

Most people are unaware of my MS, and that's how I envision your experience—a condition that lingers in the background, present but not dominant. The road to diagnosis can be difficult one. The start is hard. It’s emotional and can sometimes cause tensions between loved ones. One day, in the future, I hope you will realise it’s not actually as bad as you feared, and some days, MS slips from memory entirely.  

So best of luck with your college course, aim high to achieve the goals you want in your career and you will have a bright future living with MS.

Warm Regards, 

Stephen

Dear Katie of April 6th 2016, 

Today was a tough day for you, I should know. Today was the day that you where officially diagnosed with relapsing remitting MS.  

Saying the diagnosis was a shock was an understatement. I know you never thought it could be something like that at your age. I know that it took a long time to get the label put on the symptoms that you have been having. I know that it took over a year of never-ending visits to different doctors and specialist, a year of scans, tests, x-rays, MRI’s and countless pokes of needles for blood tests. 

But then they finally said the term MS to you. I know that you are in shock, I know that you are petrified of what’s to come, fearing the unknown. I know that you are so angry at the world. I am so aware that there are a thousand different emotions going through your head at the moment. I know that the main thought you are having at the moment is that this isn’t fair, and I’ll agree with you on that. The say in life that everything happens for a reason, well sometimes it’s hard to find the reason why. 

The reason why I have chosen to write this letter to you, is to let you know that things will be okay, and that I am so proud of you. I’m not going to lie, it’s an incredibly tough and scary road that you are about to embark on. The journey will be full of twists, turns and mountains to climb. 

You will be faced with days that you are so sick that you will not be able to get out of bed. Where you have pain so severe that all you want to do is curl up and forget about the world. 

There will be days that you will face judgement and comments by people who don’t think you are sick just because you happen to be having a good day. 

There will be moments in your life that will be hard to face, watching people around you achieve life goals that you thought you would have reached.

Unfortunately, living with MS does not make you immune to life’s other challenges. There are some incredible heartbreaks to come. Some that most people will never face but you will at such a young age. Some that will make you wish the world would stop spinning because you feel you just can’t do it anymore. But Katie I want to tell you that you can and will. 

MS will also give you some awesome opportunity’s and bring some of the most incredible people into your life. 

Before closing this letter, I wish to thank you. Thank you for becoming one of the strongest people I know. It can be hard but you can do this! It will be okay. I promise. 

Lots of love,

Katie 2024 

CHope House, 

Longevity Lane, 

Lovely Limerick.

Hi Clare, 

I know you are ill.

How beautiful you look though – the image of me. 

Pardon my modesty!

B.D. – Before Diagnosis – 

I’m right, am I not? That’s how you see it. Your life fragmented into the befores and the afters. 

Your baby finder, left hand waved at everyone continuously. 

Your right eye blinked and winked yet nobody chatted you up. When you lined up for a free throw at basketball, you missed, though you used to score. 

The numbness and pins and needles lasted for hours, not minutes. 

Your mouth cound neither control your tongue nor the speech that emanated from it. 

Your difficult gait, problematic eyesight and incoherent speech would hospitalise you. 

B.D. – Why would you want to go back there?

D for Diagnosis

Pins, prods, pokes, needles, no food, nudity – part of the process. 

Wobbles, wonders, weariness, welcome sleep – part of the process. 

No diagnosis, no prognosis, what the hell’s osmosis? – Part of the process. 

Lost, lousy, alone, bereft – Part of the process. 

M..R.I scan and lumbar puncture – uncomfortable part of the process. 

“You have MS” the specialist said, from the end of the bed, then walked away. 

SHOULD NOT HAVE BEEN PART OF THE PROCESS!

A.D. – After Diagnosis

You look up the web. 

Would I be better off dead, if I lose my walk and lose my talk?

Dependency, despair, stuck in a chair. 

Who in their right mind would want to ‘go there’?

Now

You live, love, mourn, cry, 

treasuring the knowledge you ain’t gonna die. 

Life just moved sideways, in a different direction.

Giving you valuable time for introsprection. 

You recognize your disability, interspersed with pain,

But empathise your possibilities, a myriad to gain. 

Clare, I wish you well in all that you do

You have MS – It doesn’t have you. 

Sláinte, 

Do Chara dílís, 

Clár. 

­­­­­­Dear Cousins & Friends

For many years you have supported me through my Ulcerative Colitis and its complications which saw me hospitalised several times, not least during the PanProctoColectomy with End-Ileostomy surgery, which I underwent in 2016 to resolve it. During these tricky years you may have heard me mention the odd neurological symptom, which doctors & I put down as probable extra-intestinal manifestations that are part of inflammatory bowel disease.

Since my mid twenties I’ve had episodes when my right foot did not lift willingly off the ground and I would trip over it, and I felt “heavy”, with the thumb & forefinger of my left hand taking on a life of their own. My balance was always a bit off, and as the years went on I dreaded coming down steps as I’d find myself having to cling tightly on to the rail. I used to make excuses as to why I wouldn’t go up the stairway of a historic building and I’d be sneaking a look around to see if there was a ramp to come down. I sometimes wondered if others were experiencing similar or if it was just my own idiosyncrasy. MS did cross my mind, but the very idea seemed to be dismissed when I’d raise any concern, so I gave up mentioning any such symptoms. “Your colitis can act up in many ways” I was told, “it is likely your electrolytes”.

At a hospital appointment I mentioned about a sore blurred eye, and was told my “optic disc is grey”. Another time I had an MRI for Trigeminal Neuralgia & was told I had “some hyper-intensities, cant tell you of their significance.” I mentioned neurological symptoms again, & my short term memory, when tested, was poor. I was diagnosed with “mild cognitive decline”. I ended up being lost to follow-up.

Only in summer of 2023, aged 62, did a Neurologist diagnose me with MS, when my symptoms were florid. I’d endured several bad falls, ended up unconscious at home, unable to summon help or move for hours. Most of the feeling had left my lower legs, I experienced “electric shock” sensations,  arm weakness, poor hand dexterity, muscular spasms, & fainting due to rapid blood pressure drop. The decline was quite abrupt, as I had managed to do a skydive in Gran Canaria a few months before.

Cousins and friends, you were as puzzled at my diagnosis, just as the Neurologist was at how late in the day I came to present to him. “Are you sure the doctor said that, it’s a dreadful disease!” I wanted you all to simply take in the diagnosis, and you did when it sank in, and you have been great even when I bombard you with updates good and bad! Being told what I had, proved to be a huge relief and validation for my largely unexpressed concerns. I was at long last able to “wear the t-shirt” that was waiting long in my metaphorical wardrobe!

Dear Darling,

I’m writing this letter not for you to read now, but perhaps one day when it might hold meaning. Putting my thoughts down helps me process them, and maybe it will help you understand someday.

Twelve years ago, I was diagnosed with relapsing-remitting MS. Initially, I was terrified. It felt like a dark cloud over our future, bringing immense fear of the unknown—what would this mean for our family, for me, for you?

Thankfully, I’ve been fortunate. My symptoms have been mild and have always receded. MS has been a quiet passenger in my life rather than a disruptive driver. It’s something I’ve had to accept, but it hasn’t stopped me from living fully.

I’ve shared my diagnosis only with a few close family members and friends. It’s not a secret, but it doesn’t define me. MS has been a small part of our journey together. The moments that truly matter—watching you grow, sharing laughter and tears, navigating life’s ups and downs—define us.

My days are filled with the joyful chaos of parenthood, the satisfaction of work, and the warmth of family life. MS is there, but it’s in the back seat, and I hope it always will be. Yes, there are moments of anxiety about the future, but they are fleeting. What remains constant is my determination to enjoy and cherish each day.

A fantastic support system helps me maintain this positive outlook. We are surrounded by loving family and friends, and I have excellent healthcare professionals. I am also grateful for advances in MS research. Living with MS today is very different from what it would have been 20 or 30 years ago. While there’s still progress to be made, it’s a hopeful time for me, and I’m thankful for where we are now.

Life’s unpredictability can be daunting but also beautiful. It has taught me to appreciate the present and cherish the simple pleasures and love around us. I hope you carry that with you as you grow.

I want you to understand that while MS is part of my life, it doesn’t define me. I am your parent, your confidant, your biggest supporter, and someone who loves you more than words can express. That is my true identity.

So, even though there’s a shadow of uncertainty, it’s just a shadow. The light, the joy, the laughter—that’s what fills our days. That’s what I want you to remember. If you ever read this letter, I hope you see that despite any fears or uncertainties, life is about living to the fullest, embracing every moment, and finding happiness in the journey.

With all my love,

Mam

To Ppal,

It has been quite a journey since our introduction, and I have a few things I need to address with you. From the very beginning, you made it clear that you are here to stay, a constant presence in my life. Initially, I was confused, anxious, and fearful, especially about how you would impact my independence and the lives of my loved ones. Knowing your true nature as Primary Progressive MS was a strange relief—at least you were not the brain tumor I had feared, the same illness that took my father.

You have asked me to call you Ppal (Primary Progressive and Loyal). I think you do see yourself as some kind of twisted friend. Nearly as though you’re a gift in my life.  

Your presence has been anything but a gift, despite your insistence on calling your symptoms "gifts." Losing my balance and having to rely on two sticks for mobility was just the beginning. Your presence in my life has meant the introduction of a wheelchair, impacted by ability to speak easily, and altered my appearance and independence. Your persistence is beyond anything I could have imagined, and the speed at which you have progressed has been noted by all the neurologists I have seen. 

Despite your relentless nature, I have found ways to cope and even thrive. You may have taken some of my physical independence, but you have not touched my spirit. I've found immense strength in the love and support of my friends and family. This journey has shown me the true meaning of friendship and loyalty. I’ve met strangers who have become dear friends and have been surrounded by personal assistants who have opened up a new world for me. Their support and kindness go far beyond their job descriptions, offering me genuine care and companionship.

I sometimes think about how I used to light up a room with my smile and laughter, and you seem to take some satisfaction in diminishing that light. However, even in the face of your cruellest attempts, my laughter has not disappeared. It has become a source of strength, a reminder of the positive moments in my life. The laughter that filled my home during my father’s illness, shared between my parents and their friends, has taught me that joy can exist even in the darkest times. This remains true. Despite the challenges you have brought my way, there is always light. 

Your lack of understanding about emotions like love and laughter is clear. These are concepts beyond your grasp, but they are central to my existence. Love has been my greatest ally, helping me navigate the challenges you present. It is deeper than appearances and physical abilities. Love is a bond - something you can never touch.

Besides the constants of love, friendship, and laughter in my life, nature remains my solace. It is a constant, unyielding presence that provides me with perspective and peace. The sights, sounds, and smells of the natural world are etched in my mind and spirit. Nature’s indomitable spirit mirrors my own.

So, Ppal, while you may remain a part of my life, understand this: I will continue to live with love, laughter, friendship, and the healing power of nature. You have taken much, but you have not, and will not, break my spirit. My life with MS will be defined by my resilience and the strength of the bonds I cherish.

Sincerely,

Shona