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Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Bee the Change - 3

Bee the Change

Yes Ladies and Gents, our third 'Bee the Change' post featuring individuals voices on what they believe needs to change, feel free to comment whether you agree and if you have a 'Bee the Change' opinion.

Lets get started:

Nicola Ogston - If I could change one thing about my chronic illness it would bee, people’s perspectives

When I first saw Bethany talk about her new Bee The Change project I immediately knew that I wanted to take part and join in to get our voices heard. There are so many aspects of living with chronic illness that I wish I could change, the biggest thing however is people’s perspectives of chronic illness, more specifically their perspectives of invisible illness and disability.

My story

I’m Nicola, blogger at I’ve been writing on and off for years. My main focus is to talk about parenting and disability but I do write about everything and anything that I am passionate about.

I was born with visual impairment, my ophthalmologist said it is similar to a rare hereditary condition called Familial exudative vitreoretinopathy (FEVR). The continue causes issues with the retina, and can cause complete blindness. I can see but the vision is poor and I am classified as being legally blind, because I am the only person in the family and wasn't born prematurely he doesn’t seem 100% sure in the diagnosis

As well as my visual impairment I was diagnosed in 2013 with several chronic illnesses including fibromyalgia, hypermobility and chronic fatigue syndrome. All of which are invisible illnesses which makes people question whether I’m not being truthful when I speak about my illnesses. I've had so called friends and family members be down right nasty towards me when I’ve spoken about my illnesses, which for a while made me not want to speak openly about the symptoms I experience or try to raise awareness for the conditions but after some time I have realised that it’s their narrow mindedness that’s the problem not the visibility of my illnesses.


Having spoken to many fellow invisibility illness sufferers over the years, I know that at some point each and every one has dealt with someone who feels that they are being disingenine about their illness. Speaking from my own experience, I’ve received plenty of sceptical looks that shout you look fine, there's nothing wrong with you, you're being lazy, why don’t you get outside for some fresh air and exercise that will help! Sadly it's not only from family and friends people have experienced moments similar to those, a lot of sufferers have had this kind of scepticism from their own doctors. Doctors are supposed to know about medical conditions. I’ve heard some sufferers say they were told it’s all in their head, or had a doctor not do anything to help. Thankfully after changing doctors my current GP is understanding and does seem to listen, however there has been occasions when I’ve had an appointment for a pain or something and they’ve chalked it down to my fibromyalgia without investigation.

I wish I could change the way people think, you don’t need to see a pane of glass to know its there! Why can’t people believe that even though they cannot see the physical pain someone is in or that they are experiencing any number of their endless list of symptoms to know that what they are going through is real. We might have a smile on our faces and look normal. I can say that 9 times out of the 10 we’ve found a way to disguise our symptoms.

Sometimes I wish I had a flashing neon sign that would say what I’m going through. Maybe that way people would recognise how bad the symptoms are and how severe my pain can be!

For people to change how they think of invisible illness is to put themselves in the shoes of someone who lives with one and then

maybe they would have a little more empathy and understanding to our lives and the challenges we face daily.

My links

Website -

Twitter -

FB -

Instagram -

Pinterest -

If you wish to get involved with our 'Bee the Change', then feel free to contact us on Facebook, or our Contact page, and we'll get back to you as soon as possible ... we look forward to hearing your Changes.

Until next time,

Bethany S.

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