“Why Would Anyone Want Me?” | Life With Disability & Chronic Illness

A photo of me, a young white female with long brown hair and blue eyes. I am seen from the shoulders up and I am looking straight ahead. I am not smiling
Me, aged 33

“I can’t see why anyone would want me”

As a disabled blogger, this is by far the most common message I receive from readers and followers – particularly those in their twenties, living with disabilities and chronic illness.

For anyone out there who has ever felt this way, I get it. I hear you!

Born in 1988 with a rare progressive condition (Ullrich congenital muscular dystrophy), I’ve personally struggled with various insecurities and a lack of self-worth my whole life.

For me, the belief that “no one would ever want me” was fuelled by cruel comments, ignorance and exclusion.

Growing up, I felt invisible, unseen, overlooked, and yet, painfully inescapably obvious to all. I wanted to hide away, and, at the same time, longed for someone to notice me. To see me, the person beyond the disability.

A photo of me, aged 15, with blonde hair and sad, sallow eyes. I'm looking straight at the camera. I have my hand to my mouth.
Me, aged 15

I was one of only two disabled students at a mainstream high school, surrounded by 700 able-bodied kids. I stuck out like a sore thumb! I was the anomaly. And, I was ever-aware of it.

Seated in my manual wheelchair, unable to transfer, weight-bear or self-propel, completely reliant on others for mobility, I felt helpless, useless, a burden.

At 13, during the month of May, I was admitted to hospital with pneumonia. One of many bouts throughout my life. I didn’t tell anyone at school. No one noticed my absence. No one asked. It seemed, no one cared.

Experiences such as this further exacerbated my introversion, isolation, my mistrust in others and the overwhelming thought that I was better off alone. You can only really rely on yourself, right?

My health has always been, for lack of a better word, crap! Deteriorating with the progression of time. It is an incredibly limiting factor. So too is relying on carers. I can’t get myself in or out of bed, I can’t dress or undress myself, I can’t drive, or work. What do I bring to the table?

Me, aged approx 30, sat in a hospital waiting room wearing a face mask
Me, aged approx 30, sat in a hospital waiting room wearing a face mask

Spontaneity, what’s that? Everywhere I go, everything I do must be pre-planned. And often, those plans fall through when my chronic fatigue forbids me from leaving my bed for the entire day.

It’s no fun! It’s beyond frustrating and bloody miserable at times.

Why would anyone choose this life? Why would anyone choose to be with me? What can I offer?

I’ll be honest with you, these questions continue to plague my thoughts every now and then. Like a lingering grey cloud that will never pass by entirely.

A selfie of me, looking in the mirror, seated in my powered wheelchair. I have long, mid-brown hair and I'm wearing a grey cardigan and white leggings. In this photo, I am aged 33
Me, in my Sunrise You-Q Luca powered wheelchair. Aged 33

Yes, I’ve had romantic relationships. Some good, some not so good. I’ve dated both able-bodied and disabled guys.

My brief stint on dating app Hinge was an experience! Guys can be shamelessly brutal, often telling me I’m no one’s type and they wouldn’t consider dating a disabled girl. Though tough to hear, I was never surprised, nor do I bear any resentment.  Everyone has freedom of choice and can date whoever they want. I never felt any desire or inclination to convince anyone of my worth.

I won’t lie, my health issues and physical disability did present challenges, cause tension and resentment within relationships. Things were said that are forever imprinted in my memory.

The saying goes, “love is all you need”. I don’t believe this to be true. I think trust, loyalty and the ability to care for someone even in the darkest of times is arguably more important.

Love was very much present in one of my previous relationships, but deep down, I knew it wouldn’t last because I couldn’t rely on him. He was all in on the good days. But on the bad days – my bad days – it became increasingly clear that he wasn’t invested. He couldn’t cope. Love alone wasn’t enough.

A photo of me taken from behind - my face cannot be seen. I am at Whitby, looking out to the sea. I am seated in my powered wheelchair. My hair is tied up in a messy bun. In this photo, I am aged approximately 27
Me, in my Quantum powered wheelchair, aged approx 27

I don’t want to feed you empty clichés or try to convince you it will all work out in the end; that there’s someone for everyone. Because relationships are hard, even without the added complexities of a disability or chronic illness!

What I will say, what I want to emphasise to anyone reading this, is to focus on your relationship with yourself. Be kind to yourself, prioritise your health, your wants and needs. Stop worrying about what others may or may not think of you. Does it really matter?

A black and white graphic image of a male wheelchair-user kissing the hand of a female wheelchair-user

When you do meet someone who is worthy of you, (yes, we’re ALL worthy of love, affection and intimacy), don’t try to hide your struggles and insecurities. Be open, honest and real with them. Let them see you at your very worst.

Some will cut and run. You will face rejection. We all do. This is part of life. Don’t waste your tears over these people. Trust me, it’s not worth it!

It’s easy to find friends and lovers when you’re young, fit, able and care-free.

But, this is where those of us living with debilitating conditions hold the advantage (lucky us!). Because our lives are far from easy and care-free. We can trust that the people who choose to be with us, no matter what, truly do care.

Guest Post | How Mobility Aids Improve Independence

    AX2 Powerchairs
More than 20% of working age adults in the UK live with some form of disability, including almost half of over 65s. That’s about 14 million people. Human beings are resilient creatures, and many surprise themselves with their adaptability.
For many, the bigger challenge is a psychological one. Whether aged 20 or 90, it can be frustrating to rely on others to carry out the daily activities you once took for granted.
Mobility aids have existed for centuries, but, in recent years, technological innovations have made it possible for those living with any degree of immobility to enjoy freedom and independence on their own terms. Such aids also take some of the pressure off family members, who can rest assured that their loved ones are able to live as they wish without worrying that they are putting themselves in danger or struggling to cope.
Bespoke Powerchairs
Incredibly, the first wheelchairs are believed to have been invented in around 600BC. Stone carvings originating in both China and Greece clearly show people conveyed on wheeled devices.
Wheelchairs have evolved with the times, but the biggest breakthrough in terms of boosting independence was the introduction of powered chairs in the late 20th century.
Powered wheelchairs evolved rapidly over the past couple of years. AXUS powerchairs provide a great example of the advanced mobility technology that is now available in 2022. These are a far cry from the chairs that were available even a decade ago in terms of comfort, practicality and performance.
AXUS has developed five models of powerchair, all of which use the latest battery technology and power-efficient motors to offer a range of more than 20 miles on a single charge.
AX3 Compact Powerchair
There is something to suit everyone. For example, the ultra-compact AX3 is just 50cm wide with a mid-wheel configuration that allows it to turn on the spot! It means effortless mobility even in a small house or flat where space is at a premium.
AX5 Powerchair
The AX5, on the other hand, has a high-power motor and specially designed suspension that can handle uneven terrain. Ideal for outdoor adventurers who want to spend time in nature without the need for a friend or carer in attendance.
Each model can be further customised in various ways, such as colour, seat width and extra features. AXUS offer home consultations as standard to help customers make the right choice.

Traditional Manual Mobility Aids

Powerchairs are highly versatile, helping users remain independent around the house, at work, whilst shopping and enjoying leisure pursuits. However, powerchairs represent just one of a range of mobility aids that can give you the confidence you need to remain independent.
For those who can walk unaided but are a little less steady on their feet, fear of falling can be debilitating. In this case, manual aids from traditional sticks and canes to rollators provide that extra bit of support to boost confidence, as well as making walking easier and reducing the risk of falls.

Mobility Scooters

At the other end of the spectrum, mobility scooters literally go the extra mile. They are predominantly for use outdoors or in accessible indoor environments like supermarkets. Sime offer incredible performance and features, especially those designed for both road and pavement use. With a maximum speed of 8mph and a range of more than 30 miles, the world really can be your oyster.
Other mobility scooters, known as travel scooters, have more modest performance credentials but can be easily separated in into four or five lightweight parts without the need for tools. They are designed for easy transportation by car, train or even plane.
Limited Mobility Doesn’t Mean Limited Freedom
Reduced mobility, whether through injury, illness or disability can add extra complications and frustrations to everyday life. However, one positive aspect is that modern technology has brought us a range of mobility aids we couldn’t have even imagined a generation ago.
Make no mistake, everyone needs a helping hand sometimes, whether disabled or not. It is wonderful to have family, friends and carers to lend support. But, it is equally important to have the freedom and independence to live life on our own terms.

Mobility aids like powerchairs, rollators and scooters make this possible for millions of people, eliminating the need to rely on the support and assistance of others.

AX4 Powerchair from AXUS

This is a paid post from AXUS

www.axus.co.uk

Ouch! | Growing Up with Muscular Dystrophy

Much of my early childhood was spent collapsing on the floor, unable to get myself up.

Such fun, such fun!

Born with a rare form of congenital muscular dystrophy, I could only ever walk short distances, awkwardly, with the aid of custom-made leg splints.

Photo of me, aged 4, stood in primary school uniform and wearing leg splints
Photo of me (right), aged 8, with a primary school friend (left)

I was never able to climb stairs or tackle curbs. I tried, many times…and failed.

I would manage to stumble a few steps then drop in a heap.

At 33, my bony knees remain scarred from recurrent injuries. Small marks on my forehead serve as a reminder of falling forward onto the patio as a kid – That one hurt!!

At around the age of 9, I tumbled from a horse after it bolted unexpectedly. The result was a battered and bruised bum, as well as a lost riding boot!

Still, I got back on the horse – (well, I was lifted) – knowing I had no other option, since I couldn’t raise myself from that muddy puddle and walk away.

Photo of me, aged 9, riding a horse

In 1998, aged 10, I became completely non-ambulant and dependent on my manual wheelchair.

Photo of me, at primary school, sat in my manual wheelchair

Though it was some relief to no longer struggle desperately to stay on my feet, I then found myself thrown from my wheelchair on numerous occasions – whether due to misjudged terrain, being pushed too fast around the school grounds, the absence of belt straps and anti-tippers (I know, I know), or simple recklessness.

Oh well, you live and learn!

Now, I’m teeny tiny in stature and so, I’ve always been manually lifted and quite literally chucked around. This, inevitably, lead to further falls – or rather, being dropped on the floor and bashed against furniture.

Most of the time, I managed to laugh it off – shit happens! Other times, it was pretty damn painful.

Some years ago, a routine chest X-ray revealed a fractured lower rib.

The radiographer approached me to ask if I knew about the fracture. I told him I did, (how could I forget?). He then asked if I attended A&E following the accident – “No, what’s the point? Nothing can be done for a fractured rib”.

Though visibly surprised, he shrugged and agreed.

There are many more incidents I could recall, such as ramming my powered wheelchair – and my knees – into the bathroom sink, (unintentionally, of course!).

My bloody knee, after I accidentally rammed my powered wheelchair into the bathroom sink!

My point is, in life, we fall, we get hurt, we break. We can either wallow in self pity, or take the knocks on the chin, (sometimes literally), and choose to get over it.

Saying that, I could do without anymore ouch moments!

“Falling down is how we grow. Staying down is how we die.” ~ Brian Vaszily

My Disabled Body | Muscular Dystrophy

Anyone who knows me will tell you I’m incredibly self-conscious of my disabled body.

I’m much more of a behind-the-scenes presence, and I hate being photographed!

My insecurities have deepened over the years, as my condition (Ullrich congenital muscular dystrophy) has progressed.

My spine is curved significantly in a ‘S’ shape, shortening my torso and causing asymmetry. I am underweight with muscle degeneration, and contractures in all of my joints.

Oh, and I am a ghostly shade of pale!

Being so very slight of stature and a non-ambulatory powered wheelchair-user, clothes are ill-fitting, often uncomfortable and don’t drape well.

Most of the time I feel like a bag of crap!

As a kid, though aware of the physical differences between myself and my peers, I really didn’t care. I was generally happy with a good group of friends.

Me, wearing school uniform, aged 4
Me (right) with a primary school friend (left)
Aged 8, sat in my manual wheelchair at school
Me (second from left), aged 9, with primary school friends
Me, aged 9, with primary school friends
On holiday, in my manual wheelchair. Aged approx 12

But, of course, kids (and adults) can be blunt, and, sometimes cruel with their words and observations. As time went on, I was subjected more and more to stares, pointing, judgement and exclusion.

I became a full-time wheelchair-user at the age of 10.

Back then, it was very much a case of ‘suck it up and get on with it, these are the cards you’ve been dealt’.

Looking back, I guess it affected me more than I realised.

My teens were hard. I became increasingly withdrawn, conscious of what I consider my flaws, and constantly compared myself to other girls, wishing I looked like them.

Me, aged approx 15
Me, aged approx 17, trying to avoid the camera

Then came the dating years…

Comments such as, “you’re no one’s type” and “no one’s going to want you” massively impacted my self-perception and relationships.

Somewhere along the way, I lost myself and my sense of identity.

Now aged 33, I appear more child-like than womanly. I can honestly say, I’ve never felt sexy, or even attractive, in my entire life!

I’m not body-confident, and I don’t think I ever will be. I still compare myself to others and shy away from people, places and opportunities.

But, I am really trying to accept the fact that there is nothing I can do about my body. It is what it is – unique. I need to make the best of what I do have.

If others don’t like it, that’s absolutely fine, but they can kindly fuck off!

In an attempt to push myself out of hermit mode, I recently ‘dressed up’, took some sour-faced selfies, and posted them on Instagram…

…Excuse the Listerine in the background, haha!

The response was positive, complimentary and sincere. It gave me the confidence to write this post and ‘put myself out there’.

Why? Because I am what I am. I’m not “normal”. But what is “normal”, anyway?

What Would You Do If You Could Walk?

I lost the ability to walk 22 years ago, at the age of 1o. For me, becoming completely non-ambulant happened quite unexpectedly, over the space of a couple of weeks.

Back then, there was little to no guidance or support. I didn’t have a full diagnosis and my rather nonchalant paediatric consultant wasn’t the best!

We didn’t have the Internet or social media to research and connect with others living with muscular dystrophy. And, until I reached adulthood, I didn’t know of anyone else with the same condition.

It was difficult enough leaving behind my group of primary school friends and moving on to a different middle school. I felt very lonely and was struggling to integrate, when came the added pressure of immobility.

Attending mainstream school, I was the only one with a disability amongst hundreds of physically fit, healthy, happy kids. My family and I were very much in the dark and going it alone.

Prior to this, I could only ever walk short distances – around school and home, but never steps or stairs. Then, at age 10, I suddenly found myself unable to stay on my feet, constantly covered in cuts and bruises from falling, and I didn’t know why.

Me, aged 5, in my primary school uniform

I was referred to a counsellor, but met with them no more than 3 times, as I found it utterly pointless. How was talking with a complete stranger holding a clipboard going to help me? I couldn’t walk anymore and that was that. Get on with it, Carrie.

Yes, I was stubborn and sceptical even as a child!

Me, aged 15

People often ask me if I miss it – walking. In all honesty, I tend to fob them off with a half-hearted response; “nah, not really. Moving on…”

But the truth is, my life could and would be so very different if I could walk.

I recently asked my fellow wheelies, on Instagram, what they would do if they were able to walk…

Some of these answers really made me laugh, while others are more thought-provoking.

What would I do? Run! You wouldn’t see me for dust, mate!

Me, aged 3

Muscular Dystrophy Q&A

1. What is it?

Muscular Dystrophy is an umbrella term for a group of muscle diseases.

There are nine forms (see image above), which then divide into many more sub-types.

The various forms of MD differ significantly in which areas of the body are affected, severity, rate of progression, and the age of onset.

Some are born with the condition, while others do not display symptoms until adulthood.

2. What causes it?

A faulty or mutated gene. It is therefore, a genetically inherited condition.

If one or both parents have the mutated gene that causes MD, it can be passed on to their children. However, this doesn’t necessarily mean the children will have the condition. But they may be carriers.

I have a rare form of congenital (from birth) MD, which is an autosomal recessive disorder, meaning you inherit two mutated genes, one from each parent – as shown in the image below.

Congenital Muscular Dystrophy ~ Autosomal recessive inheritance
Congenital Muscular Dystrophy ~ Autosomal recessive inheritance

I am the only known member of my family to be affected by muscular dystrophy. My unaffected parents (both carriers) had never heard of the condition, and so, it was a huge shock to receive my diagnosis at the age of 4.

3. What form do you have and how does it differ from other types of muscular dystrophy?

I have a rare form of congenital (from birth) MD, called Ullrich.

I wrote a whole post about my life with Ullrich congenital muscular dystrophy.

But in summary, it is slowly progressive, causes joint contractures, and does not affect the heart or intelligence.

4. Can people with MD have babies?

The simple answer is YES! MD doesn’t affect fertility in any way.

My good friend Fi Anderson has a rare form of MD, and is a mother to two daughters, neither of whom have MD. Check out Fi’s blog here!

5. Can a baby be tested for it in the womb or only after birth?

Prenatal diagnosis is possible for some forms of muscular dystrophy, but not all. Non-invasive testing can be carried out from 7 weeks into a pregnancy.

If one or both parents are carriers of a particular muscle-wasting condition, there is a risk the child will be affected.

It is advisable to contact a geneticist for further information and guidance.

6. What do you wish people unfamiliar with MD knew about it?

I wish there was much more awareness of the condition, and the fact that there are many varying forms.

Sadly, many people haven’t even heard of it.

Furthermore, those who have tend to associate it with Duchenne (the most common form).

Almost every medical professional I’ve encountered throughout my life has assumed I have Duchenne, which goes to show the lack of familiarity and education.

There is a lot of information, research and charitable funding for Duchenne MD, which is fantastic. But, there is very little for other forms, which is, I have to admit, rather frustrating.

This means that people living with lesser-known forms, that are just as debilitating as Duchenne, do not receive the same support.

7. How has your life been impacted?

UCMD impacts every part of my life.

I became completely non-ambulant at age 10, and I now use a powered wheelchair.

I have severe contractures in all of my joints (knees, hips, elbows, wrists), and a severe scoliosis (curved spine). As a result, my balance is very poor.

UCMD affects my respiratory function. 7 years ago it became necessary for me to use a BiPAP machine (non-invasive ventilation) nocturnally.

For me, a common cold can very quickly develop into a serious respiratory illness, such as pneumonia (which I’ve had numerous times).

I experience chronic fatigue due to the progressive muscle-wasting and my squashed torso, which prevents expanditure of my lungs.

Illustration by Jessica from The Disabled Life ~ http://thedisabledlife.ca/
Illustration by Jessica from The Disabled Life ~ http://thedisabledlife.ca/

I try to live as “normal” a life as possible, having attended university and learnt to drive (though this is no longer possible as my condition has deteriorated).

8. Pros and Cons of living with UCMD?

The cons of my condition are mostly listed in the previous answer. The most bothersome of these are the respiratory decline and chronic fatigue.

You might think being unable to walk would be the most frustrating thing. And while I do wish I could walk, jump and run, this has never really bothered me all that much. It is what it is, and you learn to adapt.

The pros I would say, include the network of people I have in my life, people I wouldn’t know if it weren’t for my condition.

I have made some amazing friends through blogging and living with muscular dystrophy. For this, I feel incredibly fortunate and thankful.

Other pros include my Motability WAV (wheelchair accessible vehicle), blue badge for free parking, and being able to skip to the front of the queue at tourist attractions!

My Motability WAV
My Motability WAV
9. Has it changed/got worse over time?

Yes, my condition is progressive and life-limiting. My symptoms have got worse over time.

The term life-limiting can, understandably, be scary for many to hear. While I don’t expect to live to be old and wrinkly, I have no plans to pop-off anytime soon!

After all, if you’re a smoker you are limiting your life expectancy!

As a child, I could walk short distances wearing custom-made leg splints.

Joint contractures and the severity of my scoliosis has increased.

My lung function is significantly worse as an adult.

10. What are some of the common misconceptions?

There are many! Here are just a few assumptions…

I have family members with the same condition (I don’t).

I can’t have children.

I can’t have sex or a loving relationship (some even assume I wouldn’t want to).

Many assume I can walk, even when I try to explain I am completely non-ambulant.

People think I take lots of pills and potions – if only there was a miracle cure! I’d take it in a heartbeat.

For more examples, check out this blog post I wrote all about societal preconceptions related to being a wheelchair-user.


Related Blog Posts:

Muscular Dystrophy | A Guide For Parents

My Life with Ullrich Congenital Muscular Dystrophy

Scoliosis | Why I chose not to have a spinal fusion

Lifts/Elevators | Wheelchair Life

Image Description: A wheelchair-user is seen facing a lift/elevator full of able-bodied people. Caption reads, "to you it's the easy way. To him, it's the only way".
Image Description: A wheelchair-user is seen facing a lift/elevator full of able-bodied people. Caption reads, “to you it’s the easy way. To him, it’s the only way”.

As a non-ambulatory wheelchair-user for the past two decades, I’ve experienced many frustrating encounters with lifts/elevators.

~ Being unable to fit inside because they’re occupied by physically fit (lazy, ignorant) able-bodied people

~ Getting stuck in them (once on a very old ferry!)

~ Getting stuck out of them (broken/out of service)

~ Waiting, waiting, waiting…

Image Description: Closed lift/elevator doors with a sign above displaying the words, "lift not in service"
Image Description: Closed lift/elevator doors with a sign above displaying the words, “lift not in service”

As a teenager, I went shopping to my local TJ Hughes store (super cool!), which was on three floors. It was a crappy old lift but nevertheless I travelled to the top floor because, well, I wanted to!

When I came to use the lift again, it wouldn’t work – it was completely unresponsive.

Unable to walk at all, I was stranded on the third floor in my manual wheelchair.

More than a little irritated, I started hammering the call button on this lift, “you WILL bloody work!!”
It didn’t.

Image Description: 'No Entry' barriers surrounding an out of service lift/elevator. A repair man is trying to fix the lift.
Image Description: ‘No Entry’ barriers surrounding an out of service lift/elevator. A repair man is trying to fix the lift.

At this point, I was left with no other option than to be manually carried down two flights of stairs by a member of staff. Talk about awkward!

Well, it was either that or, frankly, I’d probably still be stuck there now.

Thankfully, I’m teeny tiny, my wheelchair was lightweight and foldable, and the guy who carried me was young and smelt amazing! I was tempted to ask what he was wearing but thought better of it. I’m not that weird…

It was fortunate that I wasn’t in my current powered wheelchair. If I had been, I honestly don’t know what would have happened…forever stranded in TJ Hughes!

It’s a memory that’s imprinted on my mind. It shouldn’t have happened, it was annoying, undignified, embarrassing and yes, at the time, I was thoroughly pissed off!

Although, on reflection, it is pretty funny. Got to laugh, right!

Of course, it made me wary of using lifts in the future. But I really don’t have a choice! I’m not going to avoid them and miss out just in case something bad happens.

It’s inconvenient at the time but always resolvable.

IF I do ever get stuck again, well, then I’ll worry about it…IF.


Side note ~ If you are fit and able, and have two fully-functioning legs, please use them! Kindly take the stairs and let those in need access the lifts/elevators. Ta muchly!

Scoliosis | Why I Chose NOT To Have A Spinal Fusion

In my latest piece for Muscular Dystrophy Trailblazers, I explain how and why I chose NOT to have a spinal fusion.


My Experience

Aged four, I received a general diagnosis of congenital muscular dystrophy. Many years later, this was specified as Ullrich congenital muscular dystrophy.

Aged nine, I was offered corrective scoliosis surgery.

At the time, I had no idea why I was going to see this new doctor. To me, it was just another appointment.

There was no faffing around; this guy was straight to the point!

He firmly asserted that I needed an operation to prevent further decline of my spinal curvature.

I was horrified to hear of the graphic details, lengthy recovery period, and how it could even prove fatal.

Bear in mind, we’re going back more than 20 years – the whole procedure was very different to what it is today.

Of course, as an adult I now appreciate that with any surgical procedure, doctors are obliged to inform the patient of every potential risk and outcome, including death. But this was pretty shocking and unexpected news to take in at a young age.

How I Made My Decision

As a child, I attended annual outpatient appointments at Birmingham Heartlands Hospital, where I saw a paediatric neuromuscular Consultant.

My parents and I were never given a prognosis, nor any indication regarding if or how my condition might progress. Life expectancy was never discussed and no doctor could tell if I would, in time, come to rely on a wheelchair. We were very much in the dark, living day-to-day.

Frankly, these appointments frustrated and bored me to tears! We would wait hours to see the doctor, and leave knowing nothing more than we did before.

I have, in all honesty, learnt infinitely more as an adult through my own research and from others living with muscular dystrophy.

My point here is that my parents and I had nothing on which to base our decision. Or rather, my decision.

It is now more than 20 years since I was told I needed a spinal fusion. This was pre-Google and pre-social media.

We weren’t put in contact with anyone who had experienced the operation. So, other than a brief verbal overview from the Consultant, we had no other information or point of reference.

After leaving the appointment in a state of shock, my parents told me that ultimately the choice was mine. I decided I didn’t want to put myself through such an ordeal. I was, at that age, considerably more able than I am now, and none of us had any reason to think I would deteriorate as severely as I have.

Do I Regret My Decision?

At the time, it was, or at least seemed the right decision. I was able to weight-bear, finding clothes wasn’t an issue, I was pain-free, and did not require any inhalers, medication or respiratory support.

The procedure back then was much more invasive, and the recovery extremely lengthy compared to what it is today.

My condition was stable, I was happy and relatively able. Under those circumstances, the disadvantages outweighed the potential advantages.

However, I do often wonder how different my life, body and health might be had I said yes to a spinal fusion.

No one predicted that just a year after the offer was made, aged 10, I would become completely non-ambulant within a very short space of time. Had I any indication that this might occur, my decision may have been different.

Though my scoliosis was considerable, the ‘S’ shaped curve is now much greater. Consequently, my respiratory function is significantly affected and basic comfort is a distant memory.

On bad days, when I’m in pain and struggling for breath, or when I’m ill for months (yes, months) with respiratory infections; I do regret forgoing my one opportunity to correct my skeletal deformity.

But, what’s done is done, and cannot be undone. I’m stuck with me! I can’t change past decisions. I simply have to make the best of what I have and keep moving forward.


I’d love to hear about your experiences with scoliosis and spinal surgery.

– Have you turned down corrective surgery?

– Have you had a spinal fusion? If so, how has your life changed as a result? Is it better or worse?