InvisiYouth Charity Shop Opens with first limited edition bracelets

November 30, 2021

After months of preparation, InvisiYouth launches the INVISIYOUTH CHARITY SHOP, featured on Etsy!

Welcome to the INVISIYOUTH CHARITY SHOP, featured on our Etsy store! A place where all the merch donates 100% of sales to InvisiYouth’s programs/resources AND you’re getting items that fuel our #subtleactivism vibe so you can raise awareness in a chic, minimalist way.

Buy yourself or someone you adore an InvisiYouth’s Subtle Activist Color Block Bracelet! These handmade bracelets are affordable, minimalist in style with our color-block yellow-grey style, gender neutral, adjustable and a great addition to any outfit!

Every bracelet is $4 and FREE SHIPPING WORLDWIDE with 100% of sales being donated to InvisiYouth’s program and resources that we provide for FREE year-round. So when you buy a bracelet, you’re essentially making a donation and getting a gift in return!

PLUS: EVERY bracelet is made and packaged by young adults living with chronic illness and disability in our community, so you’re supporting our nonprofit and supporting these hardworking volunteers!

And until January 31st, we’re matching our donations with bracelet giveaways! So if you donate any amount over $5 on our website (WWW.INVISIYOUTHCHARITY.COM/DONATE ), our team will give away one of our limited edition bracelets to a young person living with chronic illness/disability. So you can buy a bracelet…or a few…or make a donation so a bracelet can be donated to a deserving young person!

We want to SELL OUT of our limited edition subtle activist color-block bracelets, because every bracelet can be added to your collection and get the curiosity of others moving so you can raise awareness on the young adult chronic illness/disability community! One of our volunteers part of the shop team stated:

“For those introverts and ally supporters, buying a bracelet is a great way to support the community of young people living with chronic illnesses like me without making a large statement!”

Buy at www.etsy.com/shop/invisiyouthcharity and make sure to share our shop so more people can place their orders too! We thank you for your generosity, your support, and all your love for helping us raise awareness, raise funds, and provide more opportunities to the young adult chronic illness/disability community!

Please show some InvisiYouth love the InvisiYouth Charity Shop and buy our bracelet TODAY so you can make a direct impact supporting our small nonprofit and the young adults living with chronic illnesses and disabilities around the world that thrive when utilizing our free programs and resources!

InvisiYouth Announces Its Partnership with new Streetwear Brand, Nice Genes

February 2, 2021

The InvisiYouth Charity team is excited to announce its

partnership with the new streetwear brand, Nice Genes, as one of our new charitable sponsors.  What is unique about this apparel brand is its focus to connect since with youth culture so this next generation can become science advocates. Nice Genes has a goal to support the diverse community that is bringing awareness and aid to those of the rare disease community, and that creates a culture of next generation advocates positively impacting our world.

Founder and creator of Nice Genes, Jason Hong has made philanthropy an integral part of the apparel and merchandise he creates.  They partner with other organizations like National Organization for Rare Disorders, so we are grateful to join the Nice Genes community.

“Nice Genes is dedicated to making a positive impact for all by donating all of our profits to nonprofit organizations in need. …Customers have the option of choosing any nonprofit organization to donate to. If section is not filled, donations will be made to National Organization for Rare Disorders (NORD) and InvisiYouth.

When you purchase any of their merchandise, you get to donate 100% of their profits to InvisiYouth by simply typing in our name during your shopping selection. And if the section isn’t filled in, donations are divided between InvisiYouth and NORD (National Organization for Rare Disorders), so all products donated to organizations in need!

It is beyond exciting to get to mutually support this rare disease community by working with Nice Genes, and we love their apparel, so we know that you will also enjoy buying their merchandise to add to your collection, from their hoodies and sweatshirts, to t-shirts and hats.

Their hoodies and sweatshirts have great streetwear designs that you’ll love to wear, and their t-shirts and hats give you a variety of color options at great prices so you will be able to find something immediately to add to your wardrobe!

InvisiYouth prides itself on charitable sponsorship with brands that want to support our programs and resources aiding young adults in the chronic illness and disability community, and that is why we are honored to have Nice Genes partnering with InvisiYouth,” Dominique Viel, founder and executive director of InvisiYouth Charity states. We are thankful for the continuous financial support that our partnership with Nice Genes will bring, and we are excited to begin mutually supporting one another’s project and collaborate even more in the future as their brands grows.

Please show some InvisiYouth love to Nice Genes and buy their products today and choose InvisiYouth as the nonprofit organization to donate to in your shopping experience because when you get a cool product from Nice Genes, you are financially supporting InvisiYouth!

InvisiYouth Announces Its Partnership with New Beauty Brand, I’m 4 Love

June 1, 2020

The InvisiYouth Charity team is proud and excited to announce its partnership with the new beauty brand, I’M 4 LOVE. A line of makeup that will not only hold its ingredients in high regard but also their belief that beauty and love are synonymous and need to be celebrated in all its diversity and uniqueness.

Created by the owner Lydia Smith, someone with backgrounds in nursing and a love of makeup, this beauty brand will be filled with products that make you look and feel as beautiful as your soul.

Their first product is True Lips Moisturizing Stick–a sheer glossy formula that shines, conditions and plumps your lips. Plus, you can wear it alone or with your favorite lip color, so this moisturizing stick is something you will want to add to your daily routine! And more lip colors will be coming, so get started with True Lips Moisturizing Stick and a portion of sales will be donated to support InvisiYouth.

When the partnership was announced, Smith stated:

“Our long-term goal is to start the I’M 4 LOVE Foundation, but in the meantime through our sales, we support women-run organizations with a message of love. We are honored to partner with InvisiYouth Charity, founded by the radiant Dominique Viel.”

InvisiYouth prides itself on gaining charitable sponsorship with brands that want to support our platform and programs aiding young adults in the chronic illness and disability community. To have the blessing of financial support from brands that believe in helping our mission for these deserving young people to have tools, programs and empowerment to thrive in the present with any health struggles is our ultimate goal.

And I’M 4 LOVE is a brand that is really utilizing their reach of the beauty consumers to let them buy products that will have a ripple effect of positive great good.

Please show some InvisiYouth love to I’M 4 LOVE and buy their products because each of your purchases will be able financially support InvisiYouth.

And by supporting both InvisiYouth and I’M 4 LOVE, you will be assisting both our brands to have a greater impact on women in the world. A major thank you to our new brand partnership, I’M 4 LOVE!

InvisiYouth Responds to COVID19 Outbreak with New Miniseries on Instagram Live

April 7, 2020

In response to the global COVID19 Pandemic, many of InvisiYouth’s young adults have needed weeks of quarantine and self-isolation to preserve their health and safety. And our virtual program, InvisiYouth Chat Sessions, is on temporary hiatus due to NYC’s shutdown. To keep supporting our community’s need for enlightenment and life management, InvisiYouth has created a miniseries, InvisiYouth’s Quarantine Coffee Break, available on Instagram Live.

It has been weeks for many of us living in this era of social distancing and quarantining, so it’s no surprise that for the chronic illness and disability community have needed to juggle a lot lately. Everywhere we look, there’s news about the COVID19 Pandemic, whether it’s updates on cases, symptoms to watch, or the severity of the virus. Hearing all of this can bring some worries, anxiety and restlessness.

So, it was vital for InvisiYouth to provide a virtual program that would bring some lightness, laughs and empowering ideas into your days at home. And since our video podcast series, InvisiYouth Chat Sessions—which films in NYC—needed to go on temporary hiatus, we had to get creative.

Thus, the creation of our new mini-series, InvisiYouth’s Quarantine Coffee Break, only available on our Instagram!!

Our team did not want to add to the stressors you’re feeling, and we are adamant that your medical advice should be coming from your health professional. As a result, our mini-series will ONLY be brightening up your days in the style of our podcast show, but in a jam-packed 20-minute chat show. You deserve to laugh, smile and feel motivated while staying safe and staying home, and InvisiYouth is providing you that!

Hosted by our wonderful founder, Dominique Viel, from her home in New Jersey, she’ll be virtually hanging out with some of her mega-talented friends as different special guests for each episode. So why not take a break, drink your favorite beverage, and enjoy new episodes EVERY WEEK!

They’ll be INSTAGRAM LIVE episodes that we’re hopefully saving to be IGTV videos too.  Our first episode will drop Friday, April 10th at 1pm EST, with British Lifestyle, Chronic Illness and Fitness blogger, Ali Hemsley, and we’ll keep you updated to catch each episode!

InvisiYouth to be Featured in the documentary, The Dark Horse, and Hosted an Even in London

February 8, 2020

This time last weekend, we were hearing all about the incredible success of our InvisiYouth event in London, hosted by our founder Dominique! And it wasn’t like any other event we’ve hosted before…because this was being filmed to be part of The Dark Horse film, directed by Ashleigh HarleyThis film encompasses such an important focal point of InvisiYouth’s mission: to showcase how young adults can thrive in life with chronic illness or disability, and never ‘wait for a cure’ to live to its fullest.

The Dark Horse has a wonderful premise. On Ashleigh Harley’s website, you can see the pre-trailer for the film, she describes the film.

When a young girl is diagnosed with an incurable illness nobody can see, she fights against the perceptions of disability to get her sport recognized at the World Paralympic Games. Often struggling to walk, surviving on a liquid diet and crippled by excruciating pain, she finds freedom on the back of a very special horse.

We know how much founder Dominique loves England, so having her go to London to host our event at the gorgeous private event space by fellow nonprofit CentrePoint, was a no brainer. They are a UK nonprofit that aids young adults dealing with homelessness, so the opportunity to use their event space for our event meant so much to InvisiYouth’s team.

Old and new faces, friends, Global Brand Leaders, supporters and even Dominique’s sister, all made appearances for this event.

While Dominique gave a motivating speech to the group and shared how her own chronic illness journey led to creating InvisiYouth almost five years ago, she was also joined by our two stellar guest speakers. We had a friend to InvisiYouth, Polly Maton, Paralympic long jumper and sprinter for Team Great Britain in the 2016 Rio Paralympics (and hopefully in #Tokyo2020 this summer too) who spoke to everyone about the power of disability sport in her life.

And we were fortunate to have a personal trainer, Ultra Endurance Athlete and cystic fibrosis warrior, Sophie Grace Holmes, motivating our group about striving for your goals in the face of any adversity…and sharing how she’ll be completing her first Iron Man Triathlon this summer!

When Dominique gave her speech, she reminded the group of an InvisiYouth mantra: “You are always invincible, never invisible. So adapt, dream big, find your supporters and believe in yourself.” We cannot wait for all of you to get to see this film when it’s released later this year!

Director Ashleigh Harley explained so well in her Instagram post about how filming InvisiYouth’s event will have such an impact in her film: “What a beautiful and eye-opening day we all had working with the incredible InvisiYouth Charity event hosted by Dominique Viel as part of The Dark Horse Film. The day truly showed that no matter your adversity in life or the type of pain you suffer there is always something incredible you can achieve. A big thank you to Dominique who traveled all the way from the US to contribute her amazing work into the film.”

As more details about The Dark Horse, and features showing InvisiYouth Charity come forward, we will be sharing those details on our social media platforms. So check with InvisiYouth on Instagram to keep up to date and learn more!

Spotlight Story Program: Meet Elina Passant

It is equally important to find ways to turn aspects of your life into your passions, as it is to find things that’ll help you decompress and have fun. These are traits that are massively important when you are growing up as a young person with a chronic illness/disability, and traits valuable to our next Spotlight Story Program writer, Elina Passant. A teen from Australia, Elina’s lifelong journey to her diagnosis of hypermobile-Ehlers Danlos Syndrome and other health issues like profound deafness and neurological conditions, has shaped her perspective on life and what she finds important in enjoying it. That’s why she build her own social enterprise brand, Chronic Youth Australia last year and been part of InvisiYouth’s leadership as an IY Apprentice, and why she also advocates for young people to find hobbies outside of their health issues so they can feel well-rounded and supported as the full person. Elina’s advice through her life journey will give you tips on sharpening your perspective to live your best life!

Hi lovely people, I’m Elina. I am 19 years old and currently living in Cairns, Australia. I started my blog JustSoElina four years ago after becoming bed-bound due to my illness and I founded Chronic Youth Australia, a social enterprise apparel brand, in 2020.

My health situation seems like a never ending spaghetti ball we are trying to unravel but what we do know is that I was born with Ehlers Danlos Syndrome. This is a rare genetic condition that affects the connective tissue throughout my body, therefore it affects pretty much every system in my body. I have the hypermobile type also known as hEDS.

And over the years I’ve developed:

  • Postural Orthostatic Tachycardia Syndrome, also known as POTS, which is an abnormal increase in heart rate when sitting and standing.
  • A Traumatic Brain Injury, this one’s pretty self explanatory (and note to self: don’t fall on your head…it never ends well!)
  • A neurological condition that caused partial paralysis mainly now in my face and from the waist down. I’ve spent the past year relearning to walk as a result of this.
  • Profound Deafness because I lost my hearing unexpectedly in 2020 due to my EDS. I’m currently unable to tolerate any type of hearing aids
  • And a visual impairment. I’m currently considered low vision, but we are working on improving it.

I’ve spent more of my life sick than I have “healthy” and I use that term loosely as technically, I’ve always been sick. I just wasn’t always aware of it. It’s kinda crazy to think that I grew up believing that everything I felt was entirely normal, that everyone else felt the same way I did. It wasn’t until the symptoms started to exacerbate and become too intense that I became more vocal about it. And ultimately through that, I began to realize all those feelings were not as normal as I originally assumed.

Those feelings were all symptoms of Ehlers Danlos Syndrome, but I didn’t know that until January last year…almost 10 years after I first spoke up about how I was really feeling.

Delayed diagnosis unfortunately is a lot more common than you’d think, not everyone that is chronically ill is able to access proper diagnosis. Dismissal in the medical system is a HUGE issue that sadly many in the chronic illness community have faced at one point or another.

Especially being a young person with a chronic condition, it’s easy for our symptoms to be dismissed as hormones, mental health issues, acting out or something we will simply “grow out of.” This honestly messes with your head so much. I’ve spent so much of my life questioning myself and my body’s natural instincts. I lost complete trust in my own body and mind due to everyone constantly telling me it was all in my head, that I was doing it to myself.

This was my main reason fueling creating Chronic Youth Australia, to help reach kids and teens like myself that grow up feeling like what’s happening to their health is their own fault, or not understanding what’s happening in their own body and why. It’s important to create a sense of community and connect to others that understand the world through your eyes.

It’s important to help educate others, open up the conversation around our health, advocate for our needs and give actionable tools to help support others so we can help break down the stigma and isolation.

Chronic Youth Australia still very much in the beginning building block stages, but having something to focus on that’s not my own personal health situation that I know could possibly help make even one person’s day a little brighter, helps in more ways than one. It gives me things to look forward to and work towards, as well as a source of happiness on the harder days.

It’s so important to have things outside of your health, doctors appointments, therapies or treatments. They give you a form of distraction, allow you to switch off for a little while, and just decompress. And most importantly bring you a sense of joy. I love working on Chronic Youth Australia. It’s a huge creative source for me.

But I also make sure to have outlets that are completely separate and unrelated to anything to do with chronic illness. Sometimes it’s easy for the lines to blur when it’s something I’m so passionate about and I’m so used to my own health being my main focus.

I never intended to ever speak about my health, or become at all involved in the chronic illness community let alone advocating. I find it crazy to believe that I’ve been sharing about my health journey publicly the past few years. I always held a lot of shame surrounding my health situation, always scared of what people would think of me. It’s still something I struggle with. Healing isn’t linear, I never want to come from a place of acting like I’ve got everything all figured out and managing it easily because I’m not. I don’t think anyone fully is.

Life with a chronic illness and or disability is a bit like a roller coaster ride (or for those who also understand life with POTS, life can be as stable as our heart rate readings). There are days where you feel like you’ve got it under control, that you can totally manage it and anything else thrown at you because life feels good. And there are others when it’s like a switch has flipped and everything and anything is too much and pulling you down.

We may have superhuman abilities for dealing with as much pain and illness as we do on a daily basis whilst still going about our lives, oftentimes acting as if nothing is happening at all. But we are still human, and it’s okay to act like it.

I recently read something that stuck with me: “If a healthy person became unwell with even a few of the symptoms I deal with everyday, they’d rest and do the bare minimum until they were better. But because my symptoms are forever, I’m expected to live life as normal no matter how sick I feel.

So if you take anything from this, please just know you are doing so incredibly well to cope with everything you do. Even if you don’t feel like it right now, I promise you are.

If there were any things I wish I’d known when I was younger, I would say: 

  1. You are your biggest advocate, no one will ever fight as hard for you as you will yourself. Not in the sentiment that others don’t care, but it’s important to remember you know your own body better than anyone else and you’re the one having to live with the symptoms. Use that as your fuel.
  2. Take the time to discover a healthy emotional outlet to help you work through and express your feelings and emotions both mental and physically. I’m only just beginning to understand how my own physical illness (having multiple conditions that mess with my nervous system) impacts the way my body copes with the mental load. My outlet has always been writing, though never in a journaling sense, more creative writing and experimenting with different writing styles as there truly are so many. For others it may be talking, creating, singing, playing an instrument, adaptive sports, or listening to music. Anything that helps you feel a little lighter afterwards. Being chronically ill can be a lot. It’s important to take care of your mind as much as you do your body! 
  3. Don’t be afraid to connect with others. I was so afraid at the start to get involved with the chronic illness community or join any support groups as I was scared people would judge or think that I didn’t belong because I lacked a formal diagnosis. This is so not the case. I can honestly say I wouldn’t have gotten my diagnosis if it wasn’t from the help and information I received through my friends and our local EDS support group.
  4. Not everyone is going to understand what you’re going through and that’s okay. Don’t use the energy you have try and to get them to perfectly understand. Save that energy for the people that want to understand and support you just as you are.

You can check out the Chronic Youth Australia-x-InvisiYouth Collaboration hoody designs and graphic tee collaboration with the “Rise Up, Speak Up” designs (50% of profits are donated directly to InvisiYouth Charity) here.

Our other original designs are aimed to help advocate for yourself and others in an everyday subtle way, check it out here.

50% of the profits from all our products is put towards creating resources to support youth with chronic illnesses and disabilities!

Spotlight Story Program: Meet Megan Elizabeth

The power of the blog is strong, especially when it can be part of your own self-discovery and bringing community to others. That’s someone our latest Spotlight Story Program feature writer has learned through her writing and chronic illness journey, and we’re excited to share the story of Megan Elizabeth.  This British young adult dealt with a chronic illness journey many can relate to: the evolving diagnosis list. As she got older, Megan was diagnosed first with NF1, then hydrocephalus, and a couple years ago with ileocaecal Crohn’s Disease, and during that time, Megan learned not only how to adapt and find her passions, but how to build the person she would become with the constant support of her family. Megan knows the chronic illness journey isn’t always easy, but it has allowed her to learn about her resilience, strength, compassion and fun in her life, all traits that she’s adamant to advocate every young person with chronic illness discovers in themselves. With her five comforting mental reminders, Megan will give you the boost you need to recharge your life.

Hi InvisiYouth family! I’m Megan, a 23 year old digital communications officer and founder of the Hearth by Megan blog from Leicestershire, England. In my spare time, I love going on local travels with my family in our motorcaravan. I will also admit to getting emotionally invested in TV shows. Any Great British Bake Off fans out there? And like you, my life has been affected by chronic illness.

When I was 6-ish years old (it was a long time ago), I received a clinical diagnosis of Neurofibromatosis Type 1 (NF1) – a genetic condition, although my case is spontaneous as no one else in my family has it. I have freckling and café au lait marks on my body and I also have lisch nodules on the back of my eyes. I have partial NF1, meaning only half of my cells are affected and so far, I am one of the milder cases of NF. This meant I led a pretty normal childhood, albeit an annual genetics check-up.

A larger health shock happened when I was 13. I had an MRI scan after experiencing some neck pain, just to make sure that I didn’t have any internal fibromas, another symptom of NF.

There wasn’t much concern at the time, the scan was just going to be a baseline to go in my records. A few days later, we had a call saying the scan showed fluid on my brain and in a whirlwind week I was diagnosed with hydrocephalus and went within 24 hours of having brain surgery. I’m not too sure of the correct medical explanation, but my understanding is that I have a piece of skin blocking a channel in my brain which has resulted in enlarged ventricles. Despite two diagnoses, I was still well and discharged without surgery on the understanding that we would monitor things and have annual neurology reviews.

Since then, I struggled more with my mental health in my teens, particularly with health anxiety surrounding my conditions. With support, I got myself back on track and again was able to continue life pretty normally, bar the annual neurology and genetics appointments. I completed my GCSEs and A Levels at school and went off to study Linguistics at the University of Leeds.

Then another diagnosis came. One which really changed my life and introduced me to the world of chronic illness. In March 2019, I developed abdominal pain and vomiting which led to a hospital admission and concerns of appendicitis. Within about 48 hours of me being admitted to hospital, I needed a scan to show what was going on. After an emergency CT scan, it turned out my appendix was fine, but part of my bowel was inflamed. A colonoscopy and biopsies later confirmed I had ileocaecal Crohn’s Disease. Since then, I have been adjusting to chronic illness life with Crohn’s, which has been a rollercoaster of flare-ups and remission, immunosuppressant medication, and hospital trips and tests along the way.

I’ve had my own blog for many years, and this really helped after my diagnosis. I discovered an incredible group of people with chronic illnesses wanting to support one another and raise awareness. Social media can be a tricky thing to navigate when you are ill and seeing other people out and about enjoying life, but the chronic illness community truly lift each other up. Whether you are in hospital, struggling with something or celebrating someone’s successes, we are all here for each other through the highs and lows.

Since talking more about my experience, I’ve had messages from people saying that how much it has helped them. If it helps even just one other person, then it is worth doing.

I am grateful to have the most supportive family. I can talk to them about anything, and they would never treat me differently for having a chronic illness.

Sometimes though, you don’t want to have to go through the process of explaining why you feel a certain way. Talking to others with chronic illnesses, even if different from your own, can be one of the most comforting things. To know that we are in this together and there are people out there who simply ‘get it’.

We need to talk more. There is still a great deal that needs to be done to ensure equality, understanding and respect for people with disabilities and chronic illness, to ensure access to the right care, treatment, and diagnosis, to educate non-disabled people and so much more. The more awareness made; the more action taken.

Although living with Crohn’s Disease is immensely difficult, there is so much I’ve learnt along the way. In a weird way, I think I prefer who I am as a person now (minus my gut getting attacked by my own body).

I’m no medical expert, counsellor, or anything like that, but here are some things which help me get through the tough times and maybe something that could take comfort from too:

  1. The incredible chronic illness community is ready to welcome you with open arms.
  2. Going through traumatic experiences helps to put things into perspective. I’ve learnt to appreciate all the good moments, no matter how small. I never really knew what people meant before when they talked about ‘creating joy’. I now see this as actively choosing to do something that makes me feel good and having a range of options for higher and lower energy days. I’ll sometimes just put an episode of Friends on for 20 minutes, purely because I know it will make me smile and bring some light to darker days.
  3. I used to be a major planner. I had my life mapped out and used to set lots of goals. Living with Crohn’s has taught me to live in the moment more. Learning to be present has been a positive lifestyle change. It’s important to focus on the certainty of this moment, rather than the uncertainty of tomorrow.
  4. I have more empathy with others and want to help people. I am more understanding and determined to make the most of life. I want to raise awareness for all of us going through the hardships that come with chronic illness. To give everyone a voice and to create a better society where people feel safe, respected, and able to talk openly about health.
  5. Stand your ground and be honest – Don’t be afraid to advocate for yourself if you feel like someone is not listening to you properly or respecting your concerns, even if it is a medical professional. Trust your instincts if something doesn’t feel right.

It takes someone truly brave and strong to live with chronic illness. Remember how resilient, wonderfully unique, and beautiful you are both inside and out. We’ve got this!

Spotlight Story Program: Meet Kate Henry

The journey may not always be easy, but it’s your life and deserves to be lived with all the joys and passions that fuel your heart! That’s a big message from our latest Spotlight Story Program feature writer, not only in her life journey with chronic illnesses, but also in the advocacy and digital fingerprint she’s leaving on the world.  Say hello to InvisiYouth’s first New Zealander Global Brand Leader, art and design student, Kate Henry! Living with illnesses like IgA immunodeficiency, Hashimoto’s disease, POTS, and more, Kate has had many challenges for her health thrown her way since she was born. But as she’s gotten older and began finding what brings her joy, Kate began working towards being an active participant in her life, and finding happiness through adapting and excelling. With seven life mindset-boosting tips, Kate’s words will give you a deep realness on living your best life in the ways your health can allow.

*Kia Ora!

My name is Kate and I am a 19-year-old art and design student all the way from little old New Zealand, Aotearoa.

My journey with my health begins all the way back in 2002, yup that’s right… the year I was born. Although considered a perfectly healthy baby, I was apparently always unsettled. I seemed like I was in pain a lot of the time and had trouble keeping my food down, which were all just little glimpses of what my future was going to be like.

From the age of five, my health became even more disruptive to my quality of life as I began to experience chronic pain, nausea, frequent infections and viruses—many things no five-year-old should have to deal with. Over the next few years of my life I was tested on, trialed on medications and spent a lot of time with my mum sitting right beside my bed, holding my hand until I fell asleep.

At the age of seven, I was diagnosed with IgA immunodeficiency and a severe gluten intolerance. After being treated for these and removing all gluten from my diet, I found some relief, a kind of relief that every kid deserves.

But then high school happened, my body changed and unfortunately my health did too.

I was getting increasingly ill, passing out during classes, unable to eat any food without being sick, and in severe pain almost every minute of every day… all while trying to balance being a teenager. Over the next six years, I was diagnosed with Hashimoto’s disease, hypothyroidism, Fibromyalgia, Postural Orthostatic Tachycardia syndrome (POTS) and a slightly curved spine resulting in chronic back, pelvic and leg pain. Safe to say, my life got flipped upside down and everything became increasingly hard. School was hard, socialising was hard, getting out of bed was hard, being me in this body was hard. But chronic illness is hard, and my experience with it is no exception to that.

But when everything feels hard, everything also feels heavy. And with my body taking so much away from me already, lately I have been actively choosing to make my experience that tiny bit easier, choosing a much happier life no matter the circumstance. Unfortunately, that’s a lot easier said than done, when the odds are against you, but so worth it in the end. Small changes for me have made a world of difference.

Accepting that this is where I am at, that this is how much my body can do before it breaks, that this is my life and I’ve just got to work with the body I’ve been given are all thought processes that have allowed me to accept my situation. By no means does this mean that I’m smiling my way through the whole flare up, but instead of feeling guilty for not being able to do as much as others or resenting my body for the pain it puts me in, I am simply kinder to myself, which allows me to feel a bit more like me again.

Over the 19 years I’ve got to experience in this beautiful body of mine, I am so proud of how far I have come and eternally grateful for much I have managed to achieve. But the most exciting part is that this is just the start, and that there is so much more I have to look forward to, no matter the circumstance of my health. And you do too.

I completely understand that positivity is not a cure and that sometimes we want to grief our past life, our healthy life. And I think that is also an incredibly important part of the healing process, but if we can just be slightly kinder to ourselves and our situation, we might have more time to enjoy the better parts of this life we are getting to live.

So although I’m no expert and to be completely honest, I’m still figuring this whole chronic illness thing out. I’ve decided to write down some of the small tips that have helped me on this journey so far… I hope they can help you too!

  1. Look after that beautiful brain of yours. Many people with chronic illnesses also suffer from mental health conditions too. For many our physical symptoms will be with us for a while, if not forever. But by looking after our mental health we don’t have to lose who we are to our illness. We can just adapt instead.
  2. Recognise your strength—Yes you! Life with chronic illness can be so incredibly tough so you are so strong for doing life in a body that makes everything that bit harder.
  3. Reach out—there are so many amazing communities out there either online or in person that can support you. Plus making spoonie friends is always the best!
  4. Adapt—for so long I was so stuck in my ways, continuing to live my life like a healthy person, like everyone else around me. But that was extremely tiring and if anything made me even sicker. So changing the way you live to work with your body not against it can be super beneficial!
  5. Always be you. When living with chronic illness, we can come consumed by the idea of being sick that we forget who we are. Doing small activities that remind yourself of who you are before your illness and who you will be throughout can be helpful xx
  6. Find people who make you feel good <3. The better the support system, the better the experience.
  7. Allow yourself to feel—don’t be getting all guilty for being upset for where you are at or for your health, chronic illness sucks, it always will and it’s totally okay to be upset about that. But afterwards, find someone to give you a nice big hug, and remind yourself just how well you are doing.

I am so proud of you 🙂

Hugs and spoons,

Kate xx

*  “kia ora” is a way to say hello and express gratitude in New Zealand. It derives from the indigenous Māori language, te reo.

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 Jasmine Chen

Perseverance, energy, adaptability, joy and wisdom. These are all traits we try to supply to all our young adults in the InvisiYouth community, and all perfect descriptors of our newest Spotlight Story Program feature writer, Jasmine Chen. From New Jersey, Jasmine is not your average 28 year old because she’s also a double lung transplant warrior after dealing with RSV. Her chronic illnesses have given her the life experiences to look at the world with such an empathetic and passionate lens. With her eagerness to improve her daily life, Jasmine has advocated not only for her physical health, but also her mental health, empowering others in the benefits of therapy too. We are so excited for you to read Jasmine’s story, and learn her five life lessons that you can easily apply in your daily life too.

My name is Jasmine, I am 28 years old from New Jersey and in July, I will be two years post- double lung transplant. Despite all the challenges of the past two years (and a pandemic to top it off), it was the best decision I ever made, and managing this condition constantly reminds me of what really matters in life:  family, friends, and finding purpose.

Every year, my birthday would come around, and every year, I would blow on my candles and wish for the same thing: to have healthy lungs.  My chronic health journey began when I was three: a doctor’s visit turned into a hospitalization of six weeks; while under the hospital’s care and observation for pneumonia, I caught RSV (Respiratory Syncytial Virus). As a young child, I was much more vulnerable to the virus, and the RSV ravaged through my lungs in a short period of time.  Even though I won the battle, the aftermath of permanently scarred lungs turned into an ongoing war.  I was a confusing and rare case, and the doctors tentatively diagnosed me with Bronchiolitis Obliterans.

When I entered my double-digit years, I graduated from oxygen dependency around the clock, and began physically attending school part-time.  Managing a depleted lung function on top of asthma and a defenseless immune system, my head was always calculating ways to save energy, maximize efficiency, and survive: I would gauge whether the energy spent trekking to my locker outweighed the expense of carrying around a heavy textbook.  My normal speed was a slower pace than the average student and I didn’t tend to have the breath to converse, and so I found myself walking alone a lot.

College made it more apparent that invisible illness was both a blessing and a curse.  Being able to blend in with the crowd around campus helped because it did not garner any unwanted attention.  On the other hand, I found myself often struggling to convince professors, friends, and people in general that I had a disability. A lack of visible proof resulted in many occasions where ignorance fed into a gaslighting culture and my imposter syndrome constantly minimized my suffering.

Dealing with society’s ignorance and treatment of my disability is on par, if not arguably worse, then managing the health struggles itself. 

For example, there were times I had to choose between my health and grades when a college professor refused to allow me to miss the final exam when I was ill.  There was the time HR called me in because an anonymous coworker reported me for “abusing” my handicap spot. Did I feel anger, resentment, and frustration when these situations happened?  Absolutely. Accepting that these things will happen and learning not to get stuck in it is a lifelong challenge.

Here are some of the things I would tell my younger self if I could:

#1: Learn to self-advocate. Over time, I learned to make my thoughts and concerns louder, whether that was dealing with coworkers, nurses and doctors, or insurance.  I used to believe the right way to be humble was by obediently following directions, and trusting those in charge, but eventually I realized it was important to be assertive and vocal while also doing your own research and thinking for yourself: it is possible to both retain humility and make your voice heard.

#2: Be gentle with yourself. You are more resilient than you think. People with chronic illnesses tend to experience the best and worst of life. Sometimes life throws curveballs at you, and many things are simply out of your control.  You will meet some unfriendly people, face complicated health issues, and have bad days. But you will also meet some amazing human beings, overcome those challenges, and have great days.

#3: Do not be afraid to seek help. Therapy is a lot like dating: when you meet the right one, it can be cathartic and life-changing. I built up the courage to overcome the stigma of therapy and sorted through several therapists before I found the right one. I began therapy during a dark period in college where I felt isolated, lost, and seriously wondered what the point of carrying on was. These sessions not only helped me navigate through the mental roller coaster of pre- and post- lung transplant, but also forced me to confront my own self-doubts and fears, ultimately empowering me to find and create the life I envision for myself (this will always be a work-in-progress).

#4: They are not a reflection of your self-worth. The level of your academics, the number of friends you have, and the experiences you may be deprived of are not your fault. You will meet various unique hurdles in life, whether they be people or circumstances. The amount of classes I missed, especially during the winter, was reflected in my grades.  There were friendships that died instantly or faded over time, whether they be because of betrayal, rejection, ignorance, or isolation.

Over time, this perpetuated a greater reluctance to disclose my health condition, for fear people would keep their distance once they knew.  But none of these difficult relationships or experiences define who you are or what your value is as a human being.

#5: You are the author, director, and CEO of your own identity. “She doesn’t like to mix negative and positive energy…”  This is a quote from one of my favorite movies, 50/50 (one of the few realistic movies that does not feed into an “inspiration porn” portrayal of illness).  Adam explains to his friend Kyle that his girlfriend has trouble dealing with the fact that he has cancer and refuses to mix her normal, able-bodied lifestyle (“positive energy”) with the “negative energy” of the hospital, which was a culmination of Adam’s illness and pain. For the longest time, I avoided using my handicap sign because I denied that I needed it.

I wanted one insignificant part of my life roaming the parking lots to be separate from my chronic illness life: instead, I gave myself the unnecessary burden of trying to live two identities.  But the truth is, I don’t have to choose between me who is ill and the parts of me that aren’t.  I am both.  I am just me: You are the only one who gets to define who you are. 

After some post-transplant complications, today I am at roughly 75% lung function as opposed to 16%.  I take a plethora of pills on a daily schedule, I get my blood drawn regularly, I converse frequently with my doctors and undergo whatever procedures are required, I have “moon-face” from steroids- occasionally, I argue with insurance.

But I am reborn in some sense, experiencing everything with new lungs and lung capacity I never had before.  I’ve learned to meditate and savor moments like when I’m safely at home, appreciating the silence and the privacy of my room- things I do not have when hospitalized.

Everything I’ve gone through has grown greater my empathy: I see the hidden pain in others’ eyes because I recognize it so clearly in my own.”- Melinda Means.

My first time hiking up three miles, first time walking up and down the stairs more than twice a day, and more recently, the first time dancing for a couple hours at one of my best friend’s weddings. Looking forward to many more first times.