Profiles By Blue Badge Co| Sarah Lex
Sarah Lex Is A Freelance Writer and Self-Made Blogger. She also has FMS and EDS
Poet, writer and blogger Sarah Lex, has been writing most of her life. Recently she was published in Cosmopolitan and has been part of a BBC documentary as well as having a successful, regular Blog, 'From Sarah Lex
'. She is an outspoken advocate for disability rights with many loyal followers across social media. Sarah also lives with various disabling conditions including Ehlers-Danlos Syndrome and Fibromyalgia and has the cutest new puppy called Teddy.
Passionate, Outspoken and Funny
You very quickly get the measure of Sarah Lex from her blog posts and social media activity. She is unafraid to speak honestly, openly and passionately about her own experience of chronic illness and about societal issues surrounding disability. She has written many blog posts expressing her frank, direct views addressing the prejudice, misrepresentation and misunderstanding encountered by many disabled people.
But Sarah doesn’t rant, far from it. Measured, calm and humorous, she has a really positive outlook in general and specifically about being disabled. Quite rightly unashamed and unafraid to be defined by her disability, Sarah Lex has an unmistakable inner strength and an engaging optimism. You come away from her blog feeling that you have made a new friend and could easily imagine popping round for a cuppa (except she's not a hot drink girl so it might be lemonade). I wrote to Sarah asking about her work and about her condition to gain an insight into what inspires and motivates her, how her disability informs and impacts on her work and how she maintains her infectiously positive outlook on life.
Coping With Chronic Pain
Sarah was born with a condition called Ehlers-Danlos Syndrome (hEDS). "Ehlers-Danlos Syndrome is a connective tissue disorder which means I’m extra bendy and so everything I do means I bend a bit more resulting in chronic pain and dislocations." As well as the primary condition, Sarah suffers with various additional diseases concurrent with the hEDS. "Fibromyalgia means I have widespread chronic pain and fatigue. I also suffer with IBS, migraines, poor sleeping, brain fog etc. My main battle is the pain, I’m in pain 24/7 and some days it is better than others but it is always there."
The hEDS became life changing for Sarah after a surgery aged 13 when the pain became more widespread and limiting. "I was in school and unable to do things my peers were doing, it got me really down and I wasn’t sure how I was going to cope." It took Sarah several years to come to terms with the new 'normal' especially when, aged 18, all her friends were leaving for University. "I had good and bad days then and I rarely used any mobility aids; I couldn’t understand why all my days couldn’t be good days and I resented the bad ones so much that I almost punished myself for it."
Inspired By Nan
Thankfully Sarah had great support from her family and in particular her Nan. Without them, she says "I’m not sure what I’d have done." Sarah's Nan was disabled and Sarah lived with her from the age of five. "She was a real extrovert that didn’t see having an impairment as a negative thing and that massively impacted me. I wanted to be like her. She helped me come to terms with my disability and taught me that dwelling on it would not do me any good. I guess it also helps that I’m a joker, I love to laugh and that’s been a huge thing for me." It was through talking to her Nan and to other people with similar conditions to herself that Sarah began to see life with a brighter outlook once more. "I realised it wasn’t a death sentence and I had to get on with things."
"Writing is my everything, it’s saved me on more than one occasion."
Writing has always been an important part of life for Sarah. Making up stories from as soon as she could talk, she continued to write both prose and poetry some of which she's had published. She is currently in the process of writing a young adult novel and finishing a children’s book.
She has always written a blog which began as a diary. It evolved into a collection of magazine-style articles on life, disability and beauty, plus the occasional product review. Her light-hearted, familiar tone combined with her honestly expressed opinions make the reader feel they can trust Sarah Lex. Evidence of which can be seen in her thousands of followers on social media. "My younger self would not believe that I’m a writer as it was always a distant dream, younger me didn’t think she was good enough or had much to say but she’d be pretty made up right about now."
Sarah isn't planning to stop writing any time soon. "I want to write more; I want to educate and raise awareness, I want books out, I want to continue blogging and freelancing. If words are involved, I’m there."
Let's Talk About Sex Baby
Although by no means limited to the subject of disability, it is a topic Sarah returns to regularly. A self-proclaimed activist for rights and representation of disabled people, Sarah speaks out on various issues surrounding disability. She featured in a great mini-documentary in 2017 titled "Things Not To Say To Someone Who Uses A Wheelchair"
. Young adult wheelchair users discussed the common faux pas of thoughtless able-bodied people. Raising awareness with humour and normalising the appearance of disabled people on TV.
Recently, Sarah wrote her first piece for Cosmopolitan. It's a candid and cheeky piece about sex and disability. It's titled 9 Things Wheelchair Users Want You To Know About Their Sex Lives and you can read it HERE "I am incredibly proud of as disability and sex are never discussed in mainstream media. So, that’s bloody awesome."
It's not the first time Sarah has written on the subject. From Sarah Lex hosts at least 3 articles discussing the shocking revelation that disabled people can, and do have sex! Her stance on this matter is perfectly clear; "We need the attitudes towards sex and disability to change, we need the barriers broken down and challenged, and we need disability to be included in sex education."
What Able-Bodied People Need To Know About My Disabiity
Sex isn't the only area full of gaping holes in knowledge and understanding about the reality of disability. I asked Sarah, what do you wish able-bodied people understood about your disability? "The two most important things I wish people knew about my disability are: 1. One day I might be able to walk for a short period of time using my crutches, other days I am completely reliant on my powerchair. I’m still disabled on both days. I haven’t been miraculously cured, I’m just having a different kind of pain day. 2. Not all wheelchair users are paralysed. We all use wheelchairs for completely different reasons, and if I stand up from my powerchair it is not a spectacle. My legs work and move, they just don’t work that well and I get really sore and tired."
Becoming less able-bodied Sarah believes has made her much more understanding. "I am more aware of people’s needs, especially access needs and I want to use my platform to help make a change. I think I have a lot more empathy too."
When Writing Isn't Always Possible
Although her disability can provide a wealth of subject matter from which to draw on in her writing, Sarah's particular condition can also hinder the physical act of getting words down. "It can be a huge inconvenience, especially since I suffer really badly with my hands." Speech-to-text software isn't a reliable solution either "my speaking isn’t that great and I stumble on words or have issues finding the correct word."
These episodes take their toll on Sarah's wellbeing and a few weeks of being unable to write can see her mood plummet. It's then she needs that inner strength and optimism we find exuding from her writing. And of course the support and wisdom of a loving family. And she can still find something positive to say. "My disability is also a huge part of what I write, I’ve been given so many opportunities because I write so candidly about being disabled and I’m grateful for that."
Describe a great day.
A great day would be waking up and actually have slept a solid eight hours the night before (I’m rolling my eyes here as that never happens). Logging into my emails and having some exciting opportunities, pain levels being low, not feeling battered by the fatigue bus. Speaking to my 5 year old nephew on Facetime, lots of puppy cuddles. Getting plenty of writing or photography done (I never do them on the same day as it’s too exhausting) and ordering pizza.
Describe a bad day.
A bad day involves hardly any sleep, and the sleep I did get was that kind where you’re half awake and can feel a migraine coming on. Intense pain and probably a knee, shoulder and jaw dislocation. Not being able to get myself out of bed because the agony has consumed me. Wanting to sleep but not being able to. Having an MCAS rash situation. So now I’m sore, head is banging, I’m itchy. My nerve pain is sending shooting pains down my arm and feels like my wrist is in a vice… There’s a lot, it can be really bad.
Do You Live With The Same Conditions As Sarah Lex?
Sarah's advice to someone who found themselves diagnosed with the same conditions would be to talk to people. "Get online and find a group of chronically ill people that know exactly what you’re going through. Some of my best friends I met on Twitter and they’re incredible." Fibromyalgia, also called fibromyalgia syndrome (FMS), is a long-term condition that causes pain all over the body.
As well as widespread pain, people with fibromyalgia may also have increased sensitivity to pain, fatigue, muscle stiffness, difficulty sleeping, problems with mental processes, headaches and IBS. Ehlers-Danlos syndromes (hEDS) are a group of rare inherited conditions that affect connective tissue.
Connective tissues provide support in the skin, tendons, ligaments, blood vessels, internal organs and bones. There are several types of EDS that may share some symptoms, including joint hypermobility, stretchy skin and fragile skin.
"Everyone Follow Me!"
Follow Sarah Lex on Twitter
Read the fabulous review Sarah wrote about our New Orla Kiely Range HERE And her review of two Blue Badge Co disability gifts, HERE To read more From Sarah Lex head over to her blog site HERE "You have one life, no point dwelling on what you could have had."