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.