Living with MS: Janet Stapleton’s Story

After being diagnosed with MS in 1995 at the age of 37, Janet Stapleton shares her journey through early symptoms, the emotional toll of a progressive illness, and how advances in treatment have transformed her son’s experience of the same condition.

Diagnosis and Early Experiences

Can you tell me about the first symptoms you noticed?

The first thing I noticed was extreme fatigue. This happened just seven months after undergoing surgery for a separate thoracic disk issue, during which I experienced numbness from the waist down and persistent pins and needles in my feet. I also kept falling for no apparent reason. At the time, I was working for GlaxoSmith as a respiratory executive, which allowed me to access private healthcare. I saw a neurologist within a few days, who quickly arranged for an MRI scan of my brain. The diagnosis was clear with multiple lesions on the scan, a hallmark of MS. 

What was the process of getting diagnosed like for you? How long did it take to get a diagnosis, and did you face any challenges along the way?

I was diagnosed with MS in 1995, at the age of 37. The neurologist delivered the news rather bluntly: “You’re going to have to live your life as best you can; there’s no effective treatment at the moment.” It was a lot to take in at the time, especially as a mother of three young children. My oldest was 14 at the time, and my youngest was 8. Coping with the MS fatigue whilst raising a family was tough, but somehow, we made it work. I don’t think the kids fully understood what I was going through and maybe that was a blessing in some ways.  

For five years, while living in Milton Keynes, I didn’t receive any medical treatment, largely due to the limited options available at the time. Instead, I tried various complementary therapies like massages to help with relaxation. I continued working during that time, and GlaxoSmith was very supportive, even offering to cover the cost of a second opinion elsewhere. Since I had private insurance, the diagnosis process was relatively fast; I had an MRI within a few days and then saw the neurologist again within a week. 

That said, the experience wasn’t without its challenges. The neurologist I saw was quite dismissive, which made the whole process feel impersonal and isolating at times. I remember he recommended that I stop working immediately after the diagnosis and didn’t offer much in the way of guidance or emotional support. It’s something I will never forget. 

How did you feel when you first received your diagnosis?

I was devastated. At the time, my only experience with MS was treating patients in hospital who were in the late stages of the disease. Looking back, if I had known how much my condition would progress over time, I think I would have been even more overwhelmed.

Living with MS

Were there any treatments or therapies that were particularly helpful for you?

After moving to East Yorkshire (5 years after my diagnosis), I was prescribed beta-interferon for relapsing-remitting MS. While I still experienced periods of fatigue, they weren’t as severe as before starting treatment. During this time, I even managed to complete a degree in floral installations, which helped to develop my interest in art.

However, over time, my symptoms worsened. I struggled to stand for long periods and could no longer use ladders for my floral work. Complementary therapies, like massages and deep stone therapy, were incredibly helpful for relaxation.

During relapses, I often needed a crutch, but with steroids and physiotherapy, I was usually able to regain mobility. Unfortunately, after about 20 years, the steroids stopped being as effective. That’s when my neurologist confirmed that my MS had progressed to the secondary progressive stage.

Have your symptoms changed over time?

Yes, they have significantly worsened. I’ve lost movement from the waist down, including my toes. I can still feel sensations, but they are altered. For example, I can’t tell if my shoes are on, but I can feel if someone touches my feet.

About five years ago, I had a baseline seizure. I went to sleep and was found unconscious the next morning. I had no memory of the seizure and was hospitalised for four days - just before the COVID pandemic hit. Since the seizure, I now have severe tremors in my hands. Doctors never explicitly confirmed at the time whether the seizure was caused by my MS, but said it was a strong possibility. 

You briefly mentioned COVID-19, did this affect you at all? 

Because of the MS, I was classified as clinically extremely vulnerable. I’ve had COVID three times but, surprisingly, didn’t suffer too severely. My main symptom was excessive sleepiness. I consider myself lucky that I was discharged from the hospital when I was, just before the pandemic took full effect.

As for the lockdown itself, being confined to the house didn’t impact me too much. It was almost nice to have the peace, especially as I had just been discharged from the hospital.

When you had flare ups what strategies helped you cope?

During flare-ups, my doctor would usually prescribe a four-day course of steroids. While the effects weren’t immediate, I’d typically start to see gradual improvements in my mobility over the following weeks. The speed and extent of recovery often depended on how quickly the flare-up was treated. If I didn’t receive steroids, the symptoms tended to linger much longer.

I remember one particularly severe relapse that lasted a couple of months before I began to see any real improvement. Even then, I never quite returned to the level of function I had before the relapse. It was a tough cycle to go through, but having a treatment plan in place - and knowing what to expect - did help me manage both physically and emotionally.

How has MS impacted your mental health and emotional well-being?

I try not to dwell on it too much, but there have definitely been difficult moments. Living with a progressive condition like MS inevitably takes an emotional toll. I’ve come to terms with certain realities, including putting a Do Not Resuscitate (DNR) order in place. That decision came from a place of wanting to avoid unnecessary suffering and having some control over what happens.

I’m incredibly fortunate to have a very supportive family, and I do my best to stay positive - for them as much as for myself. I feel like I owe it to them not to be miserable all the time, even when things are tough. That said, the emotional side of MS has been one of the biggest challenges. One of the hardest losses for me has been not being able to paint anymore and it was something I really loved doing.

Has MS affected your career or ability to work?

Yes, MS has definitely had an impact on my career. I had to stop working in 2000, five years after my diagnosis. At the time, I was working in the pharmaceutical industry, and it was a difficult decision to step away from something I loved.  

How has MS affected your relationships with family, friends, or a partner?

I’m incredibly lucky to have a close-knit family and a strong support system. That’s made all the difference in coping with the ups and downs of MS. My husband has been especially supportive - he even gave up work to become my full-time carer, which I’m very grateful for.

We made the decision to move to East Yorkshire because we knew that, long-term, living in Milton Keynes wouldn’t be financially sustainable. It was a big change, but a necessary one.

One of the things I’ve found hardest is not being able to drive as much anymore. I used to travel back to Milton Keynes quite regularly to visit my eldest daughter, and I really enjoyed those trips. Not being able to do that as freely now has been a bit of a loss, but I try to focus on the things I can still do. 

Advocacy & Awareness

Do you feel there are common misconceptions about MS?

Yes, but I think things have improved significantly in recent years. There’s much more awareness now, and the treatments available today are far more advanced than when I was first diagnosed. For example, my son was diagnosed with MS during the COVID pandemic, and the difference in his experience compared to mine has been remarkable. He was started on treatment immediately - an infusion therapy called Ocrevus - which simply wasn’t an option when I was diagnosed.

"I feel very lucky that medication and science have come so far since Mum’s diagnosis. Ocrevus has been a game changer. I’ve had no new lesions and the ones I had have actually reduced in size on my MRI a year into treatment. When I was first diagnosed, I I felt down because I thought I’d be in the same position as my mum - but now I’m mostly sad she didn’t have access to this kind of of treatment when she needed it." - Ben Stapleton (Janet’s youngest son), diagnosed with MS at 33.

Looking back, there were signs I didn’t fully recognise at the time (like frequent falls and overwhelming fatigue) but with three young children and a full-time job, I often just pushed through and assumed I was tired like any parent would be. Today, I think there’s more understanding that MS can affect people in very individual ways, and early intervention makes a big difference.

What advice would you give to someone newly diagnosed with MS?

First and foremost: take it easy. Give yourself time to process everything. It can feel like a huge blow when you’re first diagnosed - it certainly was for me. MS is a serious and often unpredictable disease and coming to terms with that takes time.

My advice would be to learn as much as you can about the support and resources available to you. There’s help out there, but you sometimes have to know where to look or who to ask. 

What keeps you motivated?

Without a doubt it’s my family and friends.

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This interview was conducted by Neave Smith and edited by Rebecca Pope, with graphics produced by Suzana Sultan. If you enjoyed this article, be the first to be notified about new posts by signing up to become a WiNUK member (top right of this page)! Interested in writing for WiNUK yourself? Contact us through the blog page and the editors will be in touch.