Spotlight Story Program: Meet Abbie Stapleton

In honor of Endometriosis Awareness Month, we are honored to have one of our GBL Ambassadors from England, Abbie Stapleton, sharing her health journey and some major life tips that will be fueling you to bring kindness into your life. Founder of the blog and Instagram platform, Cheerfully Live, Abbie has fused her personal experience going through the long diagnosis process with her joyful content that’s uniquely styled to provide relatable advice with empowering young adults in this chronic illness community. You will not only learn a lot about Abbie’s diagnosis journey with Endometriosis as a teen dealing with medical professionals not taking her symptoms seriously, but you will also learn how Abbie has preserved and uses her experiences to motivate in this empowered community of wonderful women around the world!  Now living with other diagnoses like Fibromyalgia and Costochondritis and Interstitial Cystitis, Abbie’s wide range of life experience lets her connect with many, and her platform truly is unique and joyful all her own.

Hi I’m Abbie, the founder of the Cheerfully Live blog and Instagram.

When I was 14, I experienced my first episode of excruciating pain, little did I know that I would have debilitating pain for the rest of my life. Every month, my periods would come and I would be bed-bound, unable to walk, fainting, with nothing working to ease my pain. I was back and forth seeing healthcare professionals month after month.

Every time I was told nothing was wrong.

My tests would come back clear and I was always dismissed as being the “unlucky one”, told I had a “low pain threshold” and that it was “part of being a woman”. I was even once asked by a doctor “are you sure you are not over-exaggerating?”. It wasn’t until my pain became chronic in December 2018, that Endometriosis started being investigated. I was sent from urology at first as they thought I was having urine and kidney infections that just wouldn’t clear, but then they realised my pain was more likely related to Endometriosis.

But when I saw a gynecologist, I was told that I could “never have severe Endometriosis because I was too young”. I pushed for an MRI to rule that out and to her surprise, my scans showed severe, deep-infiltrating Endometriosis. The relief I received after I got my results was huge! After years of gaslighting from healthcare professionals and feeling like the pain was all in my head, I realised my pain was real!

I was immediately referred to an Endometriosis specialist who tried me on the mini pill for 6 months, but unfortunately my pain only got worse. I finally had Endometriosis excision surgery with an Endometriosis specialist in December 2020, a year after being put on the waiting list. They found Endometriosis all over my uterus, left ovary, my bowel, bladder and both my kidney ureters.

During all of this I was also diagnosed with Fibromyalgia and Costochondritis and during my Endometriosis surgery I had a cystoscopy which revealed my bladder was chronically inflamed and that I had Interstitial Cystitis (also known as Bladder Pain Syndrome). Thankfully I’m now on the road to recovery and feeling some relief from my excision surgery, however I’m also now undergoing investigations for possible Fowler’s Syndrome and PoTS (Postural Orthostatic Tachycardia Syndrome).

When I was being investigated for Endometriosis, I needed a place where I could speak to others who were also going through the same thing, it was an incredibly challenging time, not only on my physical health but also my mental health. So that’s when I set up my blog and Instagram Cheerfully Live. I used my platform to document my journey, chat to others who were going through the same as me and share any advice which had helped me whilst going through the diagnosis process.

I’m so thankful for this community and my little platform – I’ve not only been able to support so many women in getting an Endometriosis diagnosis, I’ve encouraged them throughout their journey and shared helpful advice. I’ve also found comfort through everyone’s kind words and knowledge.

I’ve learnt so much about many different chronic illnesses and how best to support others, which has been invaluable!

There’s been so many amazing opportunities since starting Cheerfully Live such as becoming a GBL for InvisiYouth, speaking on the radio to share my story and collaborating with many amazing brands, charities and companies on raising further awareness for chronic illness!

And lastly, living with Endometriosis or any chronic illness is hard and so I wanted to share with you a few top tips that I’ve learnt along the way that have helped me cope living with my illnesses, both when advocating for yourself in medical settings and just in general life:

  1. The biggest piece of advice I could give is to get yourself invested into the chronic illness community! There is such a wonderful presence online of people sharing the realities of living with chronic illnesses on Instagram, but Facebook is also amazing for joining different groups that share lots of helpful advice. Also, Endometriosis UK offers face-to-face support groups, as well as lots of accurate information, so I’d definitely recommend their website, it’s a great resource.
  2. Research and really understand your condition, so that you are best able to advocate for yourself.
  3. Be honest and open with those you trust around you. Allow people to really see what it’s like living with your chronic illness, let people in, allow them to help and support you!
  4. If you are struggling to get healthcare professionals to listen or feel like you aren’t able to get answers – keep going and trust your instincts! If you know what you are experiencing is not normal, please keep fighting and advocating for yourself.

Being diagnosed with many different chronic illnesses has definitely made me the person I am today and in a way I’m grateful for the experiences and resilience that having a chronic illness has given me! I’m a much stronger person than I used to be 3 years ago, I am more empathetic and understanding of people’s situations. I fully understand now how debilitating fatigue and living with pain every day can be, but also now realise that you can’t always see on the surface that people are struggling.

So the main message of this piece is to remind you to be kind (especially to yourself) – you never know what someone might be struggling with under the surface. Your kindness and empathy might just change someone’s day, maybe even their life! So don’t wait to be kind, be kind today!

Spotlight Story Program: Meet Caitlyn Fulton

Meet Caitlyn Fulton

Growing up in Scotland with cerebral palsy, Caitlyn Fulton has challenged herself to not only become her biggest cheerleader for her daily life, but to take her hobbies and bring them into the forefront of the work and activism she does. Having studied music in university and being a model, Caitlyn is constantly free in using media and art to break stigmas while also empowering other young people that they can find their inner strength in the things they love to do. While Caitlyn’s CP doesn’t define her, it gives her a lens to tackle life and achieve her goals, and we’re proud that she’s a GBL-All Star in Caitlyn’s second year working with InvisiYouth in our leadership program! Caitlyn gives so much good advice your young adults to finds ways to enjoy life even in those medical settings, and how to have your chronic illness/disability be not your sole identifier but one of the traits that make you unique!

Hi! My name is Caitlyn, I’m 20 from Scotland. I was born premature and as a result was diagnosed with Cerebral Palsy. CP is a neurological condition which is caused by damage to the brain. For me, CP effects my balance and coordination.

I’ve used my health journey in my work by exploring the things I love, like my passion for music. I studied it at Diploma level [in university], and alongside music as a whole, I’m a vocalist at heart and love to sing. I can just be me and not think of my condition; it’s a freeing feeling of enjoyment too.

Secondly, I’ve used my health journey to inspire others by becoming a model—signed with Zebedee Talent—breaking down the barriers and stigmas about disability that the fashion and media industry hold.

It allows me to challenge stigmas on disability and raising awareness of disabled people in wheelchairs specifically by being seen in a positive light and that’s what I’m aiming for! There’s still a long way to go for the industry to be completely inclusive but in the last couple of years there’s been a real positive change within – step/wheel in the right direction.

I also play Boccia (a Paralympic sport) with a recognised team in Glasgow as part of Scottish Disability Sport. By doing so, not only am I raising awareness of disability but also women in sport too as it’s a rather male-dominated field.

Writing/blogging is recent addition but I like writing about topics that are important to me, such as disability rights and my hobbies which hopefully resonates with other young people as it’s great for them to know others out there like myself feel the same way as them. Through my health journey, I’ve grown in knowing I shouldn’t feel bad for having Cerebral Palsy. It makes me who I am, though it doesn’t define me. I wouldn’t be the person I am today if I was non-disabled and I don’t know if I would want to be a totally different person – I’m happy being in the skin I’m in because I’m unique.

I’ve found ways to support others by sharing similar experiences and being a source of encouragement that while yes, life throws a lot of challenges, I always tackle them head on and think there’s always a reason why. I’m a true believer in the phrase, “things happen for a reason’.”

It’s been great having support groups too, connecting with others who have the same conditions and interests as myself. Social media is certainly a great tool to connect and interact. Especially with the likes of InvisiYouth, it’s been brilliant being part of such a great organisation and connecting with other young people worldwide.

When I look at my experiences in medical settings, there’s things I’ve learned that I’d love to share with others to improve their experiences. Even if it’s your first appointment in a new hospital where you’ve been referred for treatment, changing consultants or moving up from child to adult services -I know how daunting all of this can be as I’ve experienced it first hand – become familiar with your surroundings, get to know the nurses/staff who’ll be caring for you if its procedure-related.

Also bring home comforts, items that make you feel calm.

Whenever I went in for operations knowing it would be a good few weeks before going home, it helped knowing who the team members were that would have me in their care and over time there’s a bond that’s created. It’s bittersweet going home, I always felt sad saying goodbye when it was time to go yet it was a great feeling to know I was on the right track and made great progress.

In your daily life, know that your condition doesn’t defy you. Yes, it’s part of you but your worth so much more with the interests you have, outlays that shaped you, make you who you are. Dealing with my health has shaped me in knowing that I’ll experience many hurdles in life but I’ll always get through them no matter what. As I’ve gotten older I don’t feel embarrassed about having a disability and now I embrace it—it’s my superpower and I have a story to tell.

My main message: There will be good and bad days but know that your condition makes you who you are. Strive to be the best version of yourself, make the most of it.

I always say to myself ‘I was given this life because I was strong enough to live it’: strong enough to the face the battles that come my way and cherish the moments in live that are to be remembered. Look your bad days in the eye and know you’ll overcome them, maybe not tomorrow or the next day but you will achieve. Whenever you feel good in yourself, you can get through it all and survived another day, that’s what I tell myself and you should too – be proud!

InvisiYouth Launches Fundraiser Campaign, InvisiYouth Give Back Challenge for December

November 25, 2019

InvisiYouth’s month-long fundraiser campaign, InvisiYouth Give Back Challenge, launches December 1st and has goals beyond just raising needed funds that will support our programs/events helping young adults with chronic illnesses and disabilities.

(Donate on our JustGiving Page or GoFundMe Page!

100% goes towards InvisiYouth’s 2020 programs!)

This is a fundraiser encouraging everyone to find the ways in their life they can donate back at any scale—where quantity per donor is NOT the priority. It is all about mobilizing young people and their support networks to be small pieces of a large fundraising goal and knowing with certainty each cent matters.

#IYGiveBackChallenge is the first fundraiser campaign built to be easy and stress-free…how amazing is it to be able to feel good AND do good during the holiday season without the hassle.

And the steps to give back are simple:

1. Find one part in your daily life this December and flip it into a mini fundraiser moment!

We’ve got lots of quick #IYGiveBackChallenge ideas here!

Make your coffee and donate that to InvisiYouth!

Collect your coins for December and make that a donation 

Donate in someone’s name as part of your holiday gift that keeps on giving!

Make those holiday parties and friend movie night hangouts super feel good and collect mini-donations from each person for InvisiYouth!

Just want to be awesome one day and drop a donation, that’s perfect!

More ideas on our website too!

2. Donate that amount (any amount, in any currency) to either of our fundraiser pages! (JustGiving or GoFundMe)

3. Donate Shout yourself! Use our #IYGiveBackChallenge certificate on our Instagram or download it here. Plus, we want to give you a shout out for your donation! So tag @invisiyouth!

4. We encourage everyone to get into the giving back spirit and challenge up to four people to also take the #IYGiveBackChallenge!

Friends, family, colleagues, loved ones, Instagram friends or your favorite celebs, influencers and athletes too! Anyone you can think of, challenge them, the more the merrier!

Our goals of $2,000 is so tangible if each person even donates the smallest amount they can and creates a way of donations for change!

100% of all donations in the #IYGiveBackChallenge will be used for InvisiYouth’s 2020 programs (virtual, resources, and leadership training opportunities) and events. Your money will be directly aiding young adults with chronic illnesses and disabilities that truly need our help to thrive and succeed in their lives.

When you donate to InvisiYouth Charity, you are changing a life for the better, and that’s a guarantee! So please, help us be able to continue our work supporting these deserving young people because we cannot do it without you.

Take the InvisiYouth Give Back Challenge, share it on social media, challenge your friends, family, followers and favorite celebrities to get philanthropic with you! What better way to end 2019 feeling good about yourself than knowing each cent you donate is impacting thousands of lives in the year ahead of us!

InvisiYouth Partners Up with Mighty Well for Another New York City Meetup

September 1, 2019 

Last month, InvisiYouth partnered up with our friends at Mighty Well for another meetup. This time it was in Midtown New York City at the Le Pain Quotidien Bryant ParkMighty Well is n athleisure company that makes medical accessory products designed to put strength, confidence and mobility back into the toolkit of spoonies and anyone else coping with ah health setback, so style and function are blended together.  This is our second year cohosting a meetup with Mighty Well, so perhaps this can be an annual alliance—what do you think?

InvisiEvents are unique for exactly all the reasons you can see above: they are fun, free, nontraditional, quirky, empowering, and philanthropic. Why not make hanging out with your friends and family an opportunity to also fundraise for charity?

Why not use your love of hanging out with friends and add a fundraiser element to it—so you pay it forward without having any hassle of developing an event from the ground up?

Why not host a hangout and meet an entire new community of awesome young adults while also fundraising?

Why not partner up with fellow nonprofits and businesses to bring empowerment and kickass joy to lots of young adults to multiple our outreach?

The answer to these questions is simple: InvisiEvents is going to international and we’re making our hangouts and our style of events regular throughout the year! But to do this…we need your help!

Many of you told us which cities you want InvisiYouth to come to next, and we need all your support to bring this to life! We need YOU to help be our cohosts, help us come to your cities and make the events a reality! Whether a brunch, yoga class, cooking day, movie night, sporting activity, painting class, coffee house meetup, wine tasting, or something totally different, we want to know what venues, what locations we can go to next.

If you want to help us bring these events to life, it’s simple—contact us on our website, or DM us on social media by FacebookTwitter or Instagram! We always answer and we want you to join the InvisiYouth family!

WEGO Health Awards 2019 Nominates both InvisiYouth Chat Sessions video podcast and founder Dominique Viel

July 29, 2019

InvisiYouth Charity has felt the love this summer as it was announced InvisiYouth Charity got two nominations with the 2019 WEGO Health Awards. Our video podcast series, InvisiYouth Chat Sessions, was nominated for Best in Show: Podcast, and our Founder/Executive Director, Dominique Viel, was nominated for Patient Leader Hero. WEGO Health is a company that connects millions of engaged healthcare consumers by allowing networks of leading patient advocates to work and collaborate across health conditions, disciplines, and topics.

Every year since 2011, WEGO Health has hosted their awards, a celebration of the world’s leading healthcare advocates, especially in the virtual space! And you know how much we love a good virtual activism platform—just take a look at our video podcast series, downloadable resources and advocacy campaigns! Categories range from Best Video Series and Best Team Performance, to Best Instagram, Healthcare Collaboration Patient, Advocating for One Another and Best Kept Secret.

There are over 6,000 nominees across 15 categories which go through a month of endorsements from the general public and then a judging panel help narrow it down to the short-list nominees per category. And it is from this that the ultimate winners are selected and get to go to Las Vegas, Nevada in October for the actual ceremony.

And what makes these award nominations for Dominique and InvisiYouth Chat Sessions so amazing is that a couple of our Global Brand Leaders are also nominees! Last year, Global Brand Leader-All Star Effie Koliopoulos from Chicago, IL was the winner for Rookie of the Year 2018! This year, our Global Brand Leader Mikaela Basile from Canada is nominated for Best Instagram, while our Global Brand Leader-All Star Madi Vanstone, also from Canada, is nominated for Patient Leader Hero, Best in Show: Podcast, and Advocating for Another.

To see such a strong pull of InvisiYouth Charity team members in the WEGO Health Awards is incredible because it shows how much our activism style affects the larger chronic illness and disability community to nominate all of them.

Lastly, we want to thank YOU for all the endorsements for us! To win these awards would be a dream, and it will definitely give more exposure to InvisiYouth’s programming and in return, give us opportunities for charitable sponsorships and partnerships to reach even more older youth with chronic illnesses and disabilities around the world. So what’s next? Will Dominique, our video podcast series, and our Global Brand Leaders win these WEGO Health Awards? Time will tell and we will keep you in the loop, but nonetheless, nominations are so humbling and we are honored.

InvisiYouth Launches its First Annual Global Brand Leaders Program

March 30, 2018

This month, InvisiYouth Charity launched its first ever Global Brand Leader Program, a coalition that consisted of accomplished teens and young adults from across the United States, Canada and the United Kingdom, which focuses on activism and fundraising campaigns.

These are a select group of youth that are all leaders in their communities, from healthcare advocates and disability activists, YouTubers and social media influencers, to business owners and philanthropists. What unites them is not their diagnoses, but rather their passion to pay it forward, empower, crack stigmas and make a difference, all the while being young adults. As InvisiYouth coins the term “medically adult-ish”™ we know all our Global Brand Leaders fall into that community that we support their our lifestyle and confidence empowerment and programming.

All our Brand Leaders are motivated and fun-loving individuals who contribute to their communities and in the health sector and beyond, and will work with InvisiYouth to mutually promote empowerment and raise funds for InvisiYouth’s programs that assist and embolden all young adults living with any illness or disability.

And they get access to all our merchandise, partnership gifts, and programs before anyone else! The objective: further InvisiYouth’s mission into their neighborhoods, to broaden awareness and access to supportive InvisiYouth events and programs can continue to be provided for our growing international young adult network.

What inspired this program was our desire to get involved with even more youth around the world that connect with InvisiYouth and want to expand our reach.  We do so much work virtually, host events in multiple cities and it has been our desire to connect even more with the young adults that support InvisiYouth.

What better way than to build a coalition of young adult rebel game-changers that will expand our grassroots efforts to support even more people in different countries, to bring our programs and events to more cities, and to support more youth. And we want to mutually support all the incredible work that is being done by so many young adults too, promoting their work to the world.

That is a major part of why we decided to create the Global Brand Leaders Program: we wanted to bring more awareness and support to the brilliant work and advocacy that’s being done by countless youth in so many countries, in hopes that by uniting them within InvisiYouth Charity—an organization that’s non-illness specific—we can tackle and overcome even more misconceptions about different illnesses and disabilities, both physical and mental.

Our motto: when we get this group to collaboratively work and motivate each other’s projects, to expand our own within them, InvisiYouth will be able to empower all young adults to gain their voice, confidence and tools to keep living the most fun and fulfilled lives with any health struggles.

Our Global Brand Leader Program is annual, and we’re excited to have an entire new group joining this 2018-2019 class in May…so if YOU want to become a Brand Leader, to support InvisiYouth’s mission, get involved in some philanthropy, and get your projects a major platform of international exposure, we want to hear from you.  Contact us if you, or a friend you know, would be a great Brand Leader!

Mighty Well and InvisiYouth Charity’s Chronic Illness Meet Up Takes on NYC

November 17, 2017

Last week, InvisiYouth Charity cohosted a fun hangout event in downtown New York City with longtime philanthropic friend Mighty Well, a fashionable medical accessories company, that was open to all young people with chronic illnesses and their friends and loved ones.

This meet-up was designed to bring together individuals with all types of chronic illnesses to meet new people, get some free swag, swap positive and funny illness stories, and get to know the missions of Mighty Well and InvisiYouth Charity better.

As Mighty Well promotes their company, build even more “friends in the fight” so the supporters (friends, family and caregivers) on the outside of illness can learn more supportive ways to communicate.

The meet-up was focused on the topic of relationships and chronic illness.

Both platonic and romantic, how to build and sustain relationships as older youth living with an illness or disability is one of the most asked questions for our community, especially InvisiYouth.

It was fun, interesting, and had lots of eye-opening moments and humor; that is key for both InvisiYouth and Mighty Well.

We are all about changing the narrative tone around chronic illness: that it is meant to find the brightness and humor in life’s challenges with honesty, not focus on the negatives and struggles.

The group was a big mix of ages, illnesses and relationships.  Some were couples, others singles, and some were friends coming to support.

Their illnesses even ranged from the visible and invisible; like Lyme disease, lupus, neurovascular conditions, POTS, connective tissue disorders and mental health challenges.

Being able to bring together the ‘healthy’ friends and loved ones was critical because it allowed others to learn from each other and see how different relationships can be formed when living with chronic illness.

For both InvisiYouth Charity and Mighty Well, meet ups and getting to know the older youth chronic illness and disability community is a main part of their work.

2018 will continue to grow in their philanthropic missions, with Mighty Well’s new products and InvisiYouth’s new programming and events, next year will be a great addition for both.

Keep up to date on all of what InvisiYouth Charity and Mighty Well have in store by following their social media:  InvisiYouth on social media at @invisiyouth and Mighty Well on Twitter @livemightywell and Instagram @mightywell_

And if you want to be part of InvisiYouth’s new programs and events, make sure to contact us and we’ll send you more information and even help you design your own InvisiYouth event or fun mini-fundraiser!