Woman who is a ‘spoonie’ explains reality of MS diagnosis after being told she was ‘too young’ to get it

A woman was told she was ‘too young’ to have MS after bringing her concerns to a doctor at the age of 21 has spoken about life as a ‘spoonie’.

Multiple sclerosis (MS) is getting more recognition in recent years, following the open and honest conversations celebrities like Christina Applegate and Selma Blair have been having with the media about their symptoms and management of the chronic disability.

But there is still a misconception that young people are unlikely to develop them too.

Amy Thompson was living her dream in Paris as an intern for a fashion consultancy when she began to notice out-of-the-ordinary symptoms.

Believing something was amiss, she took her concerns to a doctor, who brushed aside her fears of having MS, deeming her ‘far too young’ to develop the disease.

Sadly, she would later discover that she did, in fact, have MS, and now she is dedicated to educating others on the condition, as well as living her life as a ‘Spoonie’.

What is multiple sclerosis?

A condition that affects the brain and spinal cord, MS sadly has no cure, but treatment focuses on pain and symptom management.

It is estimated that approximately 150,000 people in the UK have MS, with the MS Society noting that nearly 7,100 people are newly diagnosed with the condition each year.

As per the Mayo Clinic, MS is a ‘disease that causes breakdown of the protective covering of nerves’, causing the immune system to the protective sheath that covers nerve fibres, which then interrupts communication between the brain and the rest of the body.

Everyone with the condition is affected differently, and they also fall into three main types of MS.

‘Relapsing remitting’ is a type of MS where a person will have ‘flare-ups’ of symptoms where they may ‘relapse’ before the symptoms get better and they fall into ‘remission’.

‘Secondary progressive’ MS occurs when a person’s symptoms are constant, and slowly progress.

‘Primary progressive’ MS is characterised by symptoms slowly getting worse over time, without remission periods.

What are the symptoms of MS?

While symptoms vary from person to person, the NHS states some of the most common symptoms include: fatigue; problems with your eyes or your vision; numbness or a tingling feeling in the body; feeling off balance, dizzy or clumsy; muscle cramps, spasms and stiffness; needing to pee more often or not being able to control your bladder; problems with memory or concentration; sexual problems, including a dry vagina or erection problems.

Symptoms may flare at times, ebb away, or stay constant.

For Applegate, she opened up about MS becoming noticeable to her when she began experiencing balance issues, speech issues, shaky hands, feeling weak at the knees (when walking etc) and numb toes.

She said: "For years and years and years, I'd have, like, some weird things … balance issues, speech issues.

"My hands would shake sometimes, and I remember playing tennis – I played tennis a couple times a week, and my knee would go out."

She admitted: “And I ignored it, and I still was hiking and then I’d be like, 'Whoa, that’s, hmm. That’s a weird muscle spasm'.”

For Amy, she experienced something similar.

Woman told she was ‘too young’ to have MS

Amy, who is now 28, regularly posts updates on her Instagram account by the handle ‘But You Don't Look Ill’, educating people on MS and what life is like living with a chronic condition.

She spoke to BBC North West Tonight as part of a six-part series about invisible disabilities, telling the outlet that an invisible illness often comes with a sentence said by onlookers: “You don’t look ill.”

She explained that while she doesn’t ‘look ill’, she was inspired to start an Instagram account to address this very matter.

Plus, having struggled to find other people as young as her with MS to relate to, she decided to ‘try and be that person for someone else’.

Speaking to the BBC, she said: "Through sharing my story, I realised there were so many other young people in the same boat that were just looking to find others that they could relate to.

"Then I decided to start looking into the process of setting up a charity (@mstogetherofficial). At the end of 2022, we got the official registration for MS Together.

"We now provide lots of different services to people and we focus on people aged 18 to 35 who are living with MS. What has been amazing through this whole thing is that I've just found such an amazing purpose that I really didn't expect.”

Speaking of the early signs, she explained that she first noticed that something was wrong when she began to experience numbness in her left leg.

After ignoring it for ‘a few days’, she eventually went to a doctor who ‘kind of dismissed it a little bit’.

When she questioned whether it could be MS, he allegedly replied: “No - you're far too young.”

"But things progressively got worse,” Amy said. "Then I went to see a neurologist and straight away she said 'you've got MS'.”

Since her diagnosis, she has been raising awareness on what it means to be a ‘spoonie’, exploring the ups and downs of MS.

What does being a ‘spoonie' mean?

According to the MS Society, ‘spoonies’ is a term used by people who have a chronic illness, chronic pain or a disability who typically identify with the 'Spoon Theory'.

Spoonies are people who are living life with ‘careful management’ of their daily activities and need to make adjustments and predictions throughout the day to accommodate their pain or symptoms.

This strict management is hard and requires a lot of planning and foresight.

While me and you might be able to go to the shop and carry our bags with little to no issue, a spoonie may have a 12-step plan for the entire day which considers how much strength it will take, how much they will have left afterwards, what they can do to minimise it and what the aftermath will entail.

For a spoonie, life needs to be carefully managed.

How does the ‘spoon theory’ work?

The theory, which was created by blogger Christine Miserandino, who lives with lupus, in 2003.

It works by having a person start their day with a certain number of spoons which need to last throughout the day.

Each task costs a spoon, whether it’s physical or mental, and things like taking medication will have a smaller number of spoons than larger tasks like cleaning or cooking.

If you’re having a flare-up, even small tasks might take a larger number of spoons than normal, so planning for the variations in each day is essential.

This is a great way for a person to pace themselves, as not to become burnt out. It also allows the person to borrow future spoons to complete tasks today.

Say I have 12 spoons (let’s use my Hashimoto’s congenital hypothyroidism as an example), and I have to get through the day without crashing on the bed by noon, I’ll need to figure out what activity uses how many spoons.

I might not shop today if I have dinner plans with friends tonight, reserving my spoon storage. Or I could borrow a spoon or two from tomorrow so that I’m able to rest more the following day.

It’s also important to note that a healthy person has an unlimited number of spoons to use, and the spoon theory is specifically designed for those with chronic illnesses and disabilities to manage their days and energy.

The MS Society has a great example list of how many spoons are used for each task to help you get started, and also a range of resources so you can learn more about MS and managing it.