Spotlight Story Program: Meet Lael Newton

We’ve all got baggage, but it’s the way we carry it, personalize it, and allow others to support us with it truly defines who we are as people. This is something that not only runs deeply into InvisiYouth’s programs, but also within the mantra of our new guest writer for this month’s Spotlight Story Program feature, Lael Newton.  A 19-year-old Australian, Lael was thrown into the chronic illness journey in her early teen years as she began having seizures, now diagnosed with Functional Seizures and Functional Neurological Disorder. While trying to balance all that was part of her life prior to her chronic illness to her life now, Lael has learned ways to adapt and excel. A big portion of that is using her health journey to connect, motivate and support others through her social media platform. InvisiYouth often says that YOU are the best teachers to give ideas and encouragement to others because chronic illness isn’t ‘one size fits all’ and Lael brings that forward with such confidence. Her advice for fellow chronic illness warriors, and our non-disabled allies is incredible and will fuel your hearts, we promise!

Hello beautiful people. How are you? I hope you are well in whatever season you are going through. If we haven’t met, I’m Lael, I’m 19, and I’m chronically ill.

I’ve been living this life I didn’t choose for nearly four years and it’s been one hell of a journey.

I was diagnosed with Functional Seizures when I was 16. To put it very simply, I don’t have epilepsy, but it looks like I do. I have seizures in the same way, but my brain is fine. Put my brain scans next to a healthy one, and they’re practically identical.

Functional Seizures fall under Functional Neurological Disorders (FND), where my brain works the way it should, but does some things wrong. For me, it’s how my brain processes stress.

While a normal brain would trigger the fight/flight response, my brain triggers a seizure to protect itself. My seizures are triggered by stress, both big and small. A small disagreement with someone, a major exam, and anything in-between, was enough to put me on the floor.

There is no cure, only management.

My life was flipped upside down in an instant. One second I’m playing rugby in my sports class, the next I’m on the ground. I haven’t been the same since.

I was having seizures once or twice every day for months. I dropped a quarter of my weight. I lost a lot of my hair. I lost most of me. I was falling asleep in class, and falling behind in everything. I couldn’t keep up with the pace of life I was used to. Everything was falling apart.

Everything that I loved was going away and I couldn’t stop it. It was terrifying.

I like to be control, but in an instant, the monster in my head was starting to take the wheel, and I’ve never felt more scared in my life.

This obviously didn’t help, because fear is stress, and stress ain’t great for me, creating a vicious cycle of unconsciousness.

My days are a weird mix of busy and quiet. Fitting in as much as I can into the short period of time where I can function, before I crash and need to lie down in silence so I can recover from the smallest of tasks.

I struggle with my memory, and will experience memory lapses often. I lose focus easily, and find it hard to concentrate. I will have days where I’ll be sitting in a room full of thick cloud making my thoughts hazy and difficult to understand.

I find that I can’t be in a room full of people without feeling uncomfortable, due to the crazy amount of overstimulation, which has always been one of my main triggers.

I struggle to go to big events with lots of people, lights and sound, simply because my brain can’t handle it. I’m constantly tired in every possible way. I will often need to take days off, just to regain some strength to keep going through the week.

Now, I’m so very blessed to say that I’ve been seizure free for almost a year. I’ve seen so many doctors who have helped me along the way, but it has not been an easy ride.

I still struggle with the same symptoms, probably now more than ever, but I’d rather deal with them than have a seizure every day.

I often get asked whether I would go back and change the way things went. Whether I would rather live a life without my condition. Without the tests and the needles and the hospital trips. And to be completely honest with you, I don’t think I would.

Do I wish I didn’t have to put up with all of this?

Yes.

Would I completely erase the journey?

No.

I’m a firm believer that everything happens for a reason. I wasn’t given this baggage to just stumble through life. I was given this to help those around me carrying the same thing. Offer a new way to hold it, a new way to drag it along, a new way to move around with it.

No one wants to go through this. No one thinks this chronic illness journey is a glamorous one. But if it helps one person, I’d do it all over again. No one deserves it. No one should walk this road alone. I would do it over and over again to help even one person feel less alone.

So, my chronically ill friends, I’m so sorry. I’m sorry that you have to walk this journey. I’m sorry that you have to deal with all the things that comes with this. I’m sorry that have to stumble through the day while putting on a happy face. I’m sorry that the words “but you don’t look sick” are thrown at you.

Please know, that you are strong. Really.

The strongest people are the ones that are at war with their body. I urge you to keep fighting. It gets better, it gets easier, you learn, and you grow.

You aren’t selfish for saying no to things. You aren’t a horrible friend for not responding to their messages or ignoring their calls. You aren’t lazy for struggling to leave the house. You aren’t a burden for the things you go through.

You are doing your best to survive, and that’s ok.

To my able-bodied friends, please remember that we are trying to fight a battle you don’t see. Please know that when we don’t text back, it doesn’t come from a bad place, it comes out of a place of self-preservation, where we’ve hit our limit and life is just too hard.

I hope that these few moments we’ve had together have left you with something. You’ve made my journey worth it.

I’m always around for a chat. If you have questions, ask. If you need a friend, let’s talk. I know this journey can feel incredibly lonely, so don’t be afraid to reach out to someone who can understand. Send me a message on Instagram @laelgracexx (I might take a while to respond, please forgive me, just trying to survive), I can’t wait to hear your story and share what I’ve learnt. You’re doing amazing!

~Lael x

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.*