Interview with An Inspiring Woman With An Invisible Disability

Meet Lauren Rowe: 

 

Lauren Rowe has battled Cystic Fibrosis since birth. When she was 19 she had less than 2 weeks left to live and received a double lung transplant. Although this transplant added years to her life, Lauren has been living off of 30% lung capacity.

Lauren created a not-for-profit organization in Australia called, “Gifted Life” to provide support for other transplant recipients.  Lauren’s work was acknowledged at the Women’s Weekly Women of the future awards, where she was awarded the People’s Choice award.

When Lauren isn’t busy making funny & educational videos for her YouTube channel, she provides care bags for others who are admitted into the hospital and spreads awareness for chronic illness and organ donation through speaking and media. Lauren has hosted many empowerment days for female transplant recipients around Australia to build support systems and self-esteem.

She owns two toy poodles named Tiffany and Co.

What is your diagnosis and what are your current physical issues/challenges?

I became quite unwell this year, so diagnosis is up in the air at the moment. I lost even more lung capacity and, although I have been working on gaining back what I have lost, I haven’t been able to retrieve it all.  A second double lung transplant is something that is being thought about as my current quality of life is not the greatest.

The biggest challenges are the physical limitations. Breathing on such low lung capacity means your whole body is affected and the issues are variable day to day. Some days the simplest of tasks, like getting dressed, can take it out of you; while other days you are okay to go and talk at an event (Me at the Cystic Fibrosis Australia conference this year!), hang out with your friends or (hopefully) film something.

How do they impact your life?

The unpredictability of the type of day your body is going to have means it is difficult to plan too far in advance. Unfortunately, I am a reliable person, but my body isn’t. Of course, I cannot hold down a job, travel or be as independent as I would like to be.

The reality of chronic illness is harsh, but once you adjust to accepting your limitations you can make the best of your situation, which is how I created Gifted Life.

I love your social media tagline, “Making Chronic Illness Sexy Since 1990.” How did it come about & why?

I think it started as a joke with my friend as we took a photo of me making a parody of “sexy” shoots with hospital equipment. Then I saw the power in it afterwards.

So many people with chronic illness do not feel confident within themselves, as they compare themselves with healthy people. It’s rare that one associates being chronically ill with being sexy, right? So, I wanted to plant that little seed – that you can be without hiding it.

To me, being sexy is being confident, accepting your vulnerable side (for me my health), speaking up and being proud of who you are. All of this is valuable both inside a doctor’s office, but also outside in the world.

What should people know about Cystic Fibrosis? What are the misconceptions?

  • Cystic Fibrosis varies person to person. Although some people may have had similar experiences/symptoms it never manifests the same in anyone. (My Cystic Fibrosis Journey Video)
  • It affects the lungs and digestive system, but after years on many drugs you might as well say it affects the whole body
  • It is not contagious
  • You can still have an awesome life
  • Transplant is a treatment and not a cure for it

Tell us about Rejecting Lauren Rowe and your charity, The Gifted Life. How did they start and what’s the end goal?

Well at the end of 2014 my transplanted lungs started to reject. Luckily, they stabilized. But only after I lost about 50% lung capacity over a few weeks. Before then I was quite closed off about sharing my health with people outside of my circle.

As my life shifted and I couldn’t pursue my career, I decided to use what I did know to make a small impact.

I created Rejecting Lauren Rowe because I have a dark sense of humour and everything in my life at that time (and a lot of other times if I’m being honest) was not working out. I was being rejected from every path I tried to go down, even my body rejected me, so that’s why my social accounts are named that…and Lauren Rowe was already taken.

I wasn’t able to work because of my unpredictable health. A friend was in hospital and asked me to bring some things in for her because it was an unexpected admission and she didn’t have anything. This gave me the idea for creating gift bags for those admitted into hospital unexpectedly, which is quite common post-transplant. Also, I conducted a bunch of interviews with recipients (which spread to chronic illness) and I saw that everyone felt alone in their journey to some degree.

Everyone was struggling mentally – including me. So, the empowerment days came about, as well as me creating a YouTube channel. My channel is for anyone who wants to hear and listen to a friend who somewhat “gets it.” This is why Gifted Life was born and why we have the tag line ‘you’re not alone’.

What’s your style? Any fashion tweaks you have to do because of your physical issues?

I would say casual fun, as that is what suits my lifestyle.
Remember to LAYER LAYER LAYER! Ponte pants or good quality jeggings are always comfortable with my forever fluctuating stomach, matched with vests to hide the bloat.

Usually people with breathing problems are an inverted triangle body shape so anything that brings you in on the waste and slims the top by using block colours.

What’s one thing you wear that boosts your confidence?

There is nothing like a good red lipstick when going out – and boots, for anytime ever!

Favorite book?

The Harry Potter series is a good classic but am currently reading “Bridge Burning and Other Hobbies,” by Kitty Flanagan and it has great laugh out loud moments.

Favorite Movie/TV show?

That is like asking who my favorite child is. One show I can watch over and over again is ‘Friends’

Quote you love or motto?

“I think laughter is a sacred act.” Tom Shadyac

8 Comments

  1. She’s really funny. I really like the video about Cetebral Palsy. Very clever & inspiring . Thanks Lainie for your great work .

  2. The picture of Lauren wrapped up in her CPAP/BiPap cord caught my attention. I honestly feel like having to use a BiPap is my deepest, darkest, least sexy secret. But, maybe I’m spending too much time dwelling on it, and I should just own it and move on! I also really identify with being a reliable person in an unreliable body. Thanks, Lainie and Lauren! I’ll be watching your videos first chance I get😘😘

    • Hi Joy,

      Thanks for this. My husband hates & is embarrassed by his too . I think he looks like a superhero when I see his shadow going yo the bathroom at night, thanks as always for your support. 💕

  3. Thanks so much Lauren for mentioning the physical limitations of good days/ rough days. I have CHD & pulmonary hypertension, I have been worked up for transplant & Dr’s are discussing if we list now or if I can wait a little bit. You are the first person I have ever “met” that really understands how unpredictable how you feel can be. Some days, as you said, getting dressed is an effort. Other days I am good to go. Great interview

  4. What a great snapshot of this remarkable young woman whose positive outlook has enabled her to see beyond her limitations and bring humor and sexiness to the issue of chronic illness. Her you tube videos are so creative and entertaining, she is an inspiration to all that are blessed to know her

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