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!

Help Save InvisiYouth’s Free Program and Resources by Supporting the Nonprofit’s Donation Campaign this Month

December 1, 2020

After a challenging year for the world with the COVID19 pandemic and its impact on the nonprofit community, InvisiYouth needs your help to keep our programs and resources FREE next year. And we have created our second donation campaign this year specifically to recognize the challenges many are facing financially that still want to give back. It is our campaign we call #GiveBackGrid, which is essentially our version of donation bingo going on all month long.

But InvisiYouth is upping the joy here because every single donor is AUTOMATICALLY entered to be one of two randomly selected winners of InvisiYouth gifts. That’s right, when you donate any amount, ONE TIME only, you are automatically in the running to win a giveaway. All our programs, resources and platforms are FREE for the hundreds of young adults with chronic illnesses and disabilities in over eight countries. But we cannot continue providing these programs without DONATIONS this month.

Founder and Executive Director of InvisiYouth Charity, Dominique Viel, states:

“Our annual leadership programs, virtual resources, and global interactive campaigns cannot continue being provided for free each month without your donations. And these programs have positively impacted the lives of thousands of teens and young adults living with chronic illnesses/disabilities so they have resources to create their own successful, fun and fulfilled lives.”

If you can’t afford to donate, PLEASE share this post with family, friends, your social media followers, and please ask them to donate to celebrate you this month. Pull together a group of friends, family or followers to make a GROUP donation. Here is how you do it:

1. Check out the #GiveBackGrid in our IG Story and pick any box with the donation amount of your choice.

2. Donate on our website, www.invisiyouthcharity.com/donate (type in that USD$ equivalent of your currency’s donation choice. It’s a Google search, and you can round out that donation amount. Quick and no fuss!)

3. You are automatically entered to win one of our TWO InvisiYouth treat bags.

4. We’ll cross off a box AND give you a special shout out thank you.

Truly, we need your donations to keep our annual programs going next year. Please, help us continue providing empowering programs for young adults with chronic illness/disability so they can thrive in life. Please donate any amount you can, even £3 or $5 is great, and share with your family, friends and followers to also give back and donate to support you too! We thank you lots for your donations and support this last month of 2020 because truly, all of your support has been such a shining light in a year of hardships and challenges.

Season of Giving Back BIG as our Charitable Partner, I’m 4 Love, Donates 100% of Profits during December to InvisiYouth

November 30, 2020

We are proud to announce that our charitable partner, beauty brand, I’m 4 Love, has made the immensely kind decision to donate profits to InvisiYouth Charity for sales on a product ALL DECEMBER LONG!

By using our promo code, INVISILOVE, you will get a 20% discount on their amazing product, the True Lips Moisturizing Stick, AND 100% of purchase price is donated to InvisiYouth! That’s like donating and getting a present for yourself or someone else in return! WIN-WIN!

Honored this vegan and cruelty-free beauty brand that’s all about diverse beauty, and founded by the fiecely passionate Lydia Smith is giving back BIG to InvisiYouth when 2020 has been an immensely challenging time for nonprofits like ours.

I’m 4 Love is donating ALL profits from the sales of their True Lips Moisturizing Stick ALL MONTH. Please buy this amazing moisturizing stick with promo code INVISILOVE and you’ll get 20% off your purchase! It’ll keep your lips silky smooth, with a vanilla shine that works for these winter months, underneath those face masks, and all year around.

Buy the gift that’ll give back BIG this holiday season! And watch founder Lydia Smith’s video message about the campaign on their Instagram. Promo Code lasts for 2020 only!

Founder Dominique’s Blog Presents a New Guest Series titled Podcast Master Class Miniseries for this Autumn

September 8, 2020

InvisiYouth’s founder and executive director, Dominique Viel, wanted to release a new miniseries this autumn that highlighted a virtual program that’s a source of great entertainment, education and community within the world, it’s podcasts! All September long, founder Dominique’s Blog will release the Podcast Master Class Miniseries.

This seven part miniseries will feature five incredible podcast series and their stellar hosts. Also, it will feature two InvisiYouth team parts, one focusing on some of the InvisiYouth team’s favorite moments on our video podcast series, InvisiYouth Chat Sessions, and some of our favorite podcast series that we listen to!

The five podcast series being highlighted are:

Uninvisible Podcast, hosted by Lauren Freedman

Headcase Podcast, hosted by Stephanie Hoffmann

The Women Wave, hosted by Sterling Cates and Tricia Cleppe

Visibility Today, hosted by Laura Elliott

Made Visible Podcast, hosted by Harper Spero

We wanted to give our community advice and tips to get into podcasting, some life lessons these hosts have gain from their guests, and give you an opportunity to learn more!

We are so excited to share these five incredible podcast series and their wonderful hosts! Plus, at the end, we also going to give you some of the most memorable moments from the InvisiYouth team as we look back on all our episodes of InvisiYouth Chat Sessions.

Please give a listen to all these podcasts, and make sure to subscribe to them because their shows are so much fun! AND SUBSCRIBE to our video podcast series InvisiYouth Chat Sessions on all these platforms:

 

 

 

 

 

 

 

 

YouTube

Apple Podcasts

Google Play

Spotify

Stitcher

iHeart Radio

CastBox

Deezer

PlayerFM

InvisiYouth’s Popular Leadership Program Returns for its Third Year

August 31, 2020

We are proud to announce that we are entering our third annual #GlobalBrandLeaders Program with the class of 2020-2021!

InvisiYouth’s adores this creative leadership program because it is a way to not only work with such talented and passionate young adults around the world, but also our way to showcase the varieties of ways young people can thrive in life with any chronic illness or disability.

Specializing in activism, virtual advocacy, fundraising and motivation, all of our Global Brand Leaders are the epitome of what InvisiYouth Charity stands for, and why we’re a nonprofit supporting the “medically adult-ish™” to have access to virtual programs, resources and fun events that’ll guide them to keep thriving in life with any health struggles.

From Paralympians, YouTubers, dancers, models, wellness gurus, entrepreneurs, cooks, social media marketers, podcasters, writers, photographers, university students, teachers, public speakers, high school scholars, singers, actors, and political activists, our GBL group is diverse, unique and filled with warriors.

Our new class of game-changers will bring together some familiar faces and many new faces. With the popularity of InvisiYouth’s Global Brand Leaders Program growing immensely this year, research within the InvisiYouth team began in January, and founder Dominique made the executive decision to divide our GBL Program into three levels, or the three tiers. Our most elite tier, the #GBLApprentices who are returning GBLs from previous years and will be taking a full year long internship-style role with InvisiYouth’s leadership. Our familiar faces will be found in tier two with the #GBLAllStars who are going to be just has involved in all the fun of the GBL Program but take on that special mentorship role in the community since they have been selected to return and show off their amazing advocacy skills they’ve learned. And you have tier three, our #GBLAmbassadors which are all of the new game-changers that are taking their first steps into our GBL Program and learning all we have about community-building, advocacy, fundraising and marketing.

This year, InvisiYouth is also growing our leadership program into a new country with GBLs coming from the United States, Canada, the United Kingdom including England, Scotland and Wales, Australia and our newest addition… New Zealand!

That is SEVEN countries with InvisiYouth Global Brand Leaders!

Over the past two months, our social media platforms have been introducing our elite GBL Apprentices, our returning GBL All Stars, and our new GBL Ambassadors. On our newly renovated webpages in the “InvisiYouth Community” you will see separate pages for each of our groups, so please click on their names above to learn more.

You’ll be seeing all the waves of change we can bring when united in our invincible InvisiYouth community! We are about to kick some serious ass with this group of badass women because it’s time to shatter the stigmas of what chronic illness, mental health and disability are ‘supposed’ to look and be like. It’s the 3rd Annual InvisiYouth’s Global Brand Leaders Program!

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 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.