by Emma Boniface
Today, I catch up with Laura, 32, who was diagnosed with Cystic Fibrosis at 4 months old. She is the founder of This is Visibility, an online platform that is dedicated to highlighting hidden disabilities, fighting for equality and snagging some amazing shopping discounts for the disabled from beauty Gurus Look Fantastic to fancy florist Bloom and Wild.
Determined not to let her own disability get in the way of what she wanted from life, Laura completed her History degree and went on to finish a diploma in Law inbetween hospital admissions. Shortly after she was listed for a double lung transplant which she is yet to receive.
In her free time, Laura loves to watch a good quiz show. When the Chaser isn’t taking centre stage, she is often walking her beautiful but very cheeky Newfoundlands or can be found scoping out the latest vegan burger joint.
Laura, you have quite a few achievements under your belt.
What inspires and motivates you and, where do you get the time?
I am so passionate about doing what I can to create a positive change and especially working towards a fully inclusive, diverse and accessible world and also raising awareness for disabilities and everything I do and have done has that at the heart of it.
For those people who don’t know about your main online platform, This Is Visibility, can you tell them what it is and what it stands for?
People with disabilities, both visible and invisible, are very often overlooked. I feel they are not represented and have so many challenges in so many different areas of life.
What prompted you to start This Is Visibility?
I wanted to set up This is Visibility because I wanted to create a community for people with disabilities and to help make us visible — to share stories with our Instagram takeovers and raise awareness of various mental or physical health conditions.
The shopping discounts! Such a brilliant idea. Can you tell us how to bag some money off?
Life costs £583 more on average a month solely because we have a disability (Scope — The Disability Price Tag, 2019) so I decided to start a members programme through This Is Visibility which will allow people with disabilities to receive exclusive discounts on some of their favourite brands. Sign up here.
Well, I personally love what This is Visibility is about. I am sure you have something up your sleeve, can we have a sneak peek at what is in the pipeline?
We have our ‘December’s Hidden Disabilities’ starting on the 1st December where each day will be dedicated to a different hidden disability and we will be sharing stories. We also have a special announcement coming up in the next couple of weeks!
Sounds exciting! Let us go back and hear where your journey started. You were diagnosed at 4 months old with Cystic Fibrosis — what led to the diagnosis?
I was diagnosed after a series of recurrent chest infections and digestive issues. Although I was doing well as a baby, my Mum knew something wasn’t right. Luckily where I was born in Manchester, UK, it was the policy to test for CF and my doctor arranged a sweat test for me.
Did you manage to stay well during your childhood?
The first cf memory I have is when I was four, I had double pneumonia and I remember it was so painful. It was treated with antibiotics and thankfully I made a really good recovery but I can still vividly remember it to this day.
Were there any other key points in your childhood that shaped your life or your current health?
At 9, I was diagnosed with Aspergillus. I was on high dose of steroids to treat it. Unfortunately, I caught the flu and throughout the year I suffered bouts of Gastroenteritis.
I lost over 2 stone in weight, in and out of hospital and was away from school, my friends and my family. My weight was dangerously low so I was nasal tube feeding until eventually they put me on TPN. It took a few years to get back to a healthy weight.
That sounds like a very scary time for a nine year old, did your lung function suffer at all?
Yes, it dramatically decreased to around FEV1 30% from over 90% and unfortunately it never recovered.
Having such a low lung function heading into your teens must have been tricky?
Throughout my teenage years I had a few infections, but these were treated well at hospital. Luckily I could still go to school even when in hospital, so it minimised its impact. In 2010 I was increasingly breathless. As a result of that year I was put on overnight oxygen and again my lung function decreased.
You don’t sound resentful or angry at your condition, many people would be. What helps to keep you positive throughout your journey?
Although my health has been a massive part of my life and has impacted it in many ways, I am grateful for the life it has given me. I have made the most amazing friends, been to university and been able to live a relatively ‘normal’ life despite the challenges which I am extremely grateful for.
If you could give one piece of sound advice to somebody who may be facing a transplant assessment, what would it be?
Don’t be scared, it is an extremely thorough process and it can take months, but know that if you are worried, scared, anything — reach out and talk to family, friends, your team.
Has Kaftrio changed your lung transplant status at all?
I am still currently on the transplant list, but I am still in regular contact with the team, but my in-person appointments are less frequent.
Can you, in one sentence, give a message to anybody who is living with a chronic physical or, mental illness?
“Even when times get tough, never underestimate how strong you are.”
If you could recommend 1 book, author, podcast — who would it be?
An author would be Jane Fallon. I think she a brilliant writer.
I am biased with this but for the podcast I would recommend The Inclusive Viewpoint which talks about inclusivity, especially inclusivity in the fashion industry.
Reflecting on your life-long journey living with a chronic illness, how do you feel?
It has been good to think about my life with CF and the challenges, but also what I have been able to do outside of CF. I can’t believe how many years ago some things were — doesn’t seem like that at all!
If you want to get in touch with Laura to feature on one of her Instagram takeovers or share your own experiences with This is Visibility you can do so my getting in touch at email@example.com or follow Laura on here social media channels here.
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Read More Posts Like This:
- Feeling The Fear & Changing Your Life Anyway
- Inside Out Q&A: An Emotional Response To Cystic Fibrosis with Lana O’Hara
- The Journey To 30 With Cystic Fibrosis
Are you inspired to take part in your very own “Inside Out” Q&A? Drop me a line and we can make it happen… I don’t bite, I write!