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: Louise’s Story

Meet Louise Cooper

We’ve gotten to know Louise first as one of the cool British health and lifestyle bloggers that followed InvisiYouth, but we are getting to know her even better as a member of the InvisiYouth team for this winter’s Superhero Series Winter Games this December!  She’s an Ehlers Danlos Syndrome warrior that’s found ways to balance her love of sport and travel with her illnesses, and her open honestly makes her one to watch in our book.

My name is Louise, I’m originally from Essex, England. I was diagnosed with Ehlers Danlos Syndrome, PoTS, Chiari and a whole host of other conditions in 2015 and am still under investigation for a variety of things!

I have always been a “sporty” person, I didn’t find out about my EDS (a connective tissue disorder that can affect the skin, joints, muscles and vascular system with hyper-mobility and hyperelasticity) until three years ago when I was 25, but have been in and out of hospital my whole life and had a back brace for scoliosis at the age of 12 for a few years. The only time I didn’t have to wear my back brace was when I was exercising, so, if there was a sport – I did it! I was also a competitive swimmer throughout my teens, I even made it to nationals (albeit in a relay team by HEY, it still counts!). Unfortunately, after various immune issues and bouts of glandular fever and CMV my exercise started to tail off in my late teens and early 20s.

I held down a full-time job for 5 years, bought my own apartment and car, I had everything I needed! Things came to a head around 18 months ago and my body just said ENOUGH, I was working ridiculous hours at a job in London with the commute, and not looking after myself much. The average person would burn out, let alone someone with a chronic illness, but I guess that’s just the fight in me.

So I started back with physio, some days I’m fine, some days I’m not! I like someone who gives me physio exercises based around the gym – I just respond better that way, I like to be challenged and push myself further however it is SO important to do this correctly and under supervision. Physio will always be a part of my life as I will always have ups and downs in my health but I dont see this as a negative, I learn each time what I can do to strengthen or protect my body in order to prevent or minimize thedisruptionto my body for the next time.

I have found it’s important to use supports, straps and anything else for your physio exercises and gym routines. This will always give you the confidence to know you are safe while exercising! I currently wear, finger, x 2 wrist, knee and back supports when working out. While there’s not an awful lot I can do about my ligaments and tendons, I can strengthen and tone the muscles around my body to get them performing as best as possible! Being back in the gym the last two years hasn’t always been easy. I’ve a fair share of blips along the way with disc tears, bulges and tarlov cysts now appearing, but this has only made me more determined to keep going! Keeping mobile and active reduces my pain, but there is a very careful balance, I have to make sure I dont overdo it and listen to my body!

I also have to make sure that I listen to my health not just through exercise, but through my diet and medications as well.

By health, I mean nutrition, taking my tablets and everything in between. I’ve always had food intolerances, but recently these have become a lot worse. I don’t believe in cutting out EVERYTHING from your diet, it’s everything in moderation and finding out what works for you.

My motto is – listen to yourself. I find my body tells me what I need but generally, I’ll eat meat, fresh veg and a small portion of carbs. Its about trial and error and finding what works for you, and you really, really do have to persevere, it won’t change in a week, it has to be a lifestyle change in order for it to work.

Possibly most importantly – Take your medication!! They are prescribed for a reason – and I know this can be hard, I am forgetful, this is something I’ve really had to work on! It sounds SO easy and its not that I don’t want to take them it just becomes – I’ll do it in a minute! How do I manage it now? I leave my tablets in my room and kitchen, if there staring at me, I can’t avoid them!

When living with chronic illness, it not only can take a toll on your physical health but also your mental health. My mental health impacts on my ability to participate in my exercise plans and my dietary programs. If I am feeling pessimistic (which we are all entitled to at times) or having a bad day, I am less likely to want to go to the gym or look after myself as well or cook my dinner.

Now this isn’t necessarily a bad thing, nobody in the world is 100% positive all day everyday, but for the most part, I think it is important to have a Positive Mental Attitude (PMA). Even on my bad days, I always try and find a positive. For this reason, I usually have flowers around the house – if I can’t think of anything else nice about my day or if I’m feeling low, I can always look at flowers to give me a “pick me up.”  Negative thoughts cannot change what has happened or the current situation you may be in or what your future may hold. But, what can change it? Trying.

Trying everything, and anything thrown your way.

I moved/travelled to New Zealand, started promotional modeling, made a great group of friends, went on adventures, hiked 4 hours in a bush, appeared on TV (albeit an extra!), my health was the best it had ever been! I’ve recently started a forum along with some Chronic Illness friends and we will be uploading beginners home workouts and basic physio (all are qualified, I will just be performing the routines).

But one day I woke up unable to move and spent the next 2-3 weeks in and out of hospital and have since, pack up my room and sold my furniture in New Zealand and returned to Essex to give my best chance of recover and further testing on what we believe may be neurological.

One thing that I’ve always found incredibly hard – and still do – is I look totally “normal”. I don’t have a cast on my leg or have visible scars so I often hear the phrase “but you don’t look sick”. I’m quite open about my health and try and raise as much awareness as possible, by posting “normal” pictures and trying to change the way illnesses are perceived – just because you can’t see it, doesn’t mean it’s not there!

Am I nervous, anxious and scared? Of course! But I’ll keep trying and determined to keep going, if I’ve learnt anything its that were a lot stronger than we realize and give ourselves credit for.

That is why I’m so appreciative of being asked by InvisiYouth to be a part of their Charity Team for this past Superhero Series Triathlon for disability adaptive sports.  And while I couldn’t compete that day, I am thrilled to be part of the new InvisiYouth Charity Team for the upcoming Superhero Series Event this December, Superhero Winter Games. The work they do is very close to my heart and something I’m so passionate about – I wish I would have had this connection to the community in my teens – before the days of social media!! I cannot wait to support InvisiYouth in the Superhero Winter Games run and hopefully raise a bit of awareness too!