Spotlight Story Program: Meet Rachel Hoy

Meet Rachel Hoy

Starting off 2021 with an upgrade to our Spotlight Story Program because it will now be MONTHLY human stories told BY young people FOR young people in the chronic illness/disability/mental health community! 

There is no better person to start the Spotlight Story Program for the new year than lyme disease activist and owner of the popular brand Tee Spoonies, Rachel Hoy. Being part of our Global Brand Leaders Program for two years, now as a #GBLAllStar, Australian Rachel has been such a firm believer for empowering young people with chronic illnesses to advocate for themselves. This coming from her experience living with Lyme disease and co-infections, along with POTS, MCAS, interstitial cystitis and autoimmune conditions. She understands that balancing life, work and chronic illness takes time–especially living with Lyme disease in Australia as comprehension and treatment access is harder to come by–and learning how you empower yourself to enjoy and succeed in life with any health struggles was something Rachel was super passionate for, and it resulted in her creating her own brand Tee Spoonies. Selling ethically made products like pocket tees, scrunchies, cards and more, Rachel has built a community behind Tee Spoonies that mirrors her style of activism perfectly!

My name is Rach – I’m a 28 year old Australian living with Lyme disease & co infections as well as POTS, MCAS, interstitial cystitis and autoimmune conditions.

I was infected with Lyme & co infections on a trip to the USA after finishing my Master’s degree six years ago.

The first two years after getting sick I spent most of my time searching for a diagnosis, only to find out when it did come, that the hardest part was ahead of me.

At 22 years, I had travelled the world, completed two degrees and worked as youth state manager and campaign designer for World Vision Australia, so having to step back to focus on my health was a steep learning curve.

Living with chronic Lyme disease in Australia is especially hard – it is recognised and understood even less here than overseas, which means limited access to doctors and treatments.

After six years of living with Lyme & co my illness has really progressed.

My main symptoms are severe joint pain, fatigue leaving me mainly housebound, headaches/migraines, gut, bladder and mast cell problems, and neurological issues including up to twenty seizures per day.

I learnt rather quickly how tough it could be living with chronic illness as a young person, including doctors who denied the severity of my illness and friends who left my side in the hard times.

I also realised the apparent need for us to be continually advocating for ourselves as chronically ill youth.

One day I had a light bulb moment and realised I could combine a number of my passions together: advocacy, ethical consumerism and design, in order to raise awareness about living with invisible illness.

My first design idea with Tee Spoonies was the invisible illness pocket tee, which has grown to be the most popular!

Having the tee resonate with so many invisible illness warriors has meant a lot.

I sew all of the pockets myself which adds a personal touch.

The chronic illness community is important to so many, and being a part of it in this way, and being able to create products that empower fellow spoonies has been a blessing.

Working with InvisiYouth the past two years has been a great experience. I’m proud to donate 100% of profits from our fundraiser upcycled scrunchie packs & 50% of profits from our recycled paper gift card packs to InvisiYouth.

Our brand is all about making unique, sustainable, ethically made products that are a labour of love.

We also donate 10% of all profits to the Lyme Disease Association of Australia. You can check out more on our website here: teespoonies.com

If I could give some pieces of advice to young people struggling with the throws of chronic & invisible illnesses it would be to remember your inherent value in this world over anything you could possibly accomplish.

Goals are great but values are key.

Often living with chronic illness can mean pushing back or rearranging timelines or goals, which can be disheartening, but who you are in life is a lot more important than where you are in life.

And if you’re reading this now I already know who you are is amazing, because the perseverance, resilience and strength living with serious illness requires does not come easily.

Secondly, you are not alone.

No matter how lonely, devastated or isolated you feel – there is a community out there who understand what you’re going through, and want to support, empower and help you in any way they can.

And lastly, YOU know YOU better than anyone!

Trust in yourself and advocate for your needs… with a little help from your friends 🙂

*to learn more about Rachel’s involvement in our GBL Program, click here. And to learn more about Rachel’s products with Tee Spoonies, click here.*

 

Spotlight Story Program: Meet Bridget Gum

Meet Bridget Gum

Our latest Spotlight Story comes from the East Coast of the United States, and this is not just any addition into our Spotlight Story Program, but from a special young woman who has worked her way up through InvisiYouth’s programming. 18-year-old Bridget Gum because as a volunteer with InvisiYouth during her senior year of high school, and transitioned into our international leadership program, Global Brand Leaders as a GBL-Ambassador. Bridget has fused her experience living with a rare autoimmune disorder called Transverse Myelitis and her love of advocacy, into a great future for her work as she’s now a student at Rider University with aims of helping others. 

My name is Bridget Gum and on November 11, 2002 I was found in my crib completely limp. Since I was a seven month old baby, it made it very challenging to diagnose me because I couldn’t communicate loss of sensation or ability to move, or even if I lost control of my bowel and bladder capabilities.

After six months of living in and out of hospitals and nearly dying a couple of times, I was finally diagnosed with a rare auto-immune disorder called Transverse Myelitis. This disorder attacked my immune system as well as my spinal cord, at the C5-C8 level of my spine, right around what the doctors call “Hangman’s Noose”, which is called that because most people lose the ability to breath and die.

Thankfully, for reasons no one can explain, my spinal cord injury is incomplete, which means my sensory and motor level doesn’t just stop at one level.

As a very young child, I was in therapy for an extremely long time so as to hopefully regain as much function as possible, however, I was only able to have movement and sensation from my shoulders up. Finally, when it was time, I was allowed to go to preschool. I was so excited. A couple of years ago, I found a comic that summarized my experience perfectly: a girl who uses a wheelchair at a specially designed desk for a wheelchair completely oblivious to the fact she was different.

My family treated me normally so when I went to school, I was made aware of how different I was. I grew up in an almost entirely able-bodied community, until I was in fourth grade. I finally went to a family summer camp made entirely for others with my disability, which was life-changing.

It was the first time I was with others like me, and not just being sick in a hospital together, actually doing fun activities. This was when I decided to educate myself on disabled culture and to become an advocate, for both myself and others. I began to work with my therapists to become more independent and began to work with my school to get better services and more appropriate accommodations. In eighth grade, I was diagnosed with epilepsy, completely unrelated to my previous disability.

The memory reset and medications from the seizures completely changed me and how I saw the world. I then became more open and helpful to others because I saw how helpful other people were to me and I really wanted to return that favor to the world.

Throughout my many years of hospitalizations and living with this disability, I learned a lot of responsibility and maturity, which is almost a requirement for living with a disability if you want independence. 

These qualities often seep into my personal life to the point where my friends call me the “Mom” of the group because I’m always helping people, listen to their problems, and I’m prepared for every situation, often in case of emergency.

While the lives of people with disabilities are very different, I wish we could live in a world where it doesn’t have to be.

Of course there will always be an element of medical needs that is different than an able-bodied person, I hope that others with disabilities won’t have to fight for accommodations or be surprised and overly grateful when someone makes you feel like an equal, and not someone who needs to be helped or as a burden.

Now, I have graduated high school and will be attending Rider University as a member of their honors program. And I have joined InvisiYouth Charity’s leadership program, Global Brand Leaders. I’m so excited about being a GBL-Ambassador for InvisiYouth because I want to help people and make the world a better place for everyone who lives in it, especially those with disabilities, and this gives me a platform to do that.