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 Lauren Perry

Finding your community, building your network, and boosting yourself up. These are all things that our latest Spotlight Story Program feature writer has not only incorporated into her daily life, but has projected into her activism as she empowers other young people in the disability community. And that focus on connecting with others and becoming your own best advocate stems deeply into all that Brighton, England’s very own Lauren Perry represents in her life. Living with Tourette’s Syndrome and Ehlers Danlos Syndrome, 21-year-old Lauren has needed to create power, joy and success for herself while also dealing with the journey that chronic illness can complicate.  She’s been super proactive, using social media to create her own platforms that allow for meetups with others living with chronic illness in the Brighton area, and her virtual platform with her blog and Instagram page @aticcersguidetolife, that allows her to raise awareness, connect with others, learn how to advocate even better and share about her health journey. And she also shows off her cool wheelchair with pink wheels, a must-see! Lauren’s packed so much life advice in her feature about her young adult life with health struggles and being part of InvisiYouth’s Global Brand Leaders Program that anyone can gain tips.

Hey! I’m Lauren, I’m a 21 year old disabled student living in Brighton, England. I set up my disability blog and Instagram page @aticcersguidetolife with a hope to raise awareness on life with hidden disabilities, advocate for those who are unable to do so themselves and educate people on the wider issues disabled and chronically ill people face.

Updating friends and family on my health was becoming pretty exhausting in the early stages of my illness, but I wanted to make sure they all felt included in the process as I knew they genuinely wanted to know, so starting my blog was a great way to document my journey.

My health struggles started after a coccyx injury following a fall at work when I was waitressing, coinciding with laryngitis that wouldn’t go away and at the age of 17, I became incredibly unwell.

I was sleeping for days at a time and my body was not healing properly. I struggled to get through my A Level exams and got mediocre grades. I went from a high achiever who played in bands (saxophones, clarinet, piano), ran, went to the gym 4 times a week, swam, played hockey, and partied—to the girl who had to stopped working, slept all day, and was in incredible amounts of pain in a matter of weeks. And I’ve never been the same since.

The doctors blamed my mental health initially. I struggled with panic disorder and depressive disorder, however I knew this was different. The debilitating fatigue was different. At its worst, I was sleeping 28 hours at a time. I woke up for one hour to have a drink and slept for a further 15 hours. This sleeping pattern continued till the moment I had carers at 20. I’ve had countless misdiagnosis’, painful scans, frustrating results and random symptoms- chronic illness is a journey .

Having a disability in my late teens, I noticed quickly how isolating that can be, particularly as a university student. It seemed that although there must be thousands of disabled students, I didn’t know any and I felt there must’ve been other people that felt similar to me.

I decided to set up ‘A little poorly- Brighton’ in 2019 after a year of being at university. We now have over 400 members in Brighton, England where I have founded an online community and we formed friendships and a support network for chronically ill people living in Brighton and Hove, along with their carers. Now, I regularly arrange meet ups where I have professionals run workshops such as cooking with a disability, accessing work with a disability, improving hospital experiences for chronically ill patients, self-defense classes, art therapy, just to name a few.

In addition to ‘a little poorly – Brighton,’ I also take great pride in my Instagram page and newly updated website. Accessibility is a topic incredibly close to my heart. Through my platforms, I strive to help people access the inaccessible world. InvisiYouth has inspired me to build confidence to make friendships online with people all over the world. The Pandemic has taught me that accommodations can be made for disabilities. Online learning has been incredibly accessible to me as a disabled student, I spent many months battling for more support

I started my health journey not truly identifying as a disabled woman and rather just a 17 year old girl. I saw myself with misdiagnoses and I didn’t feel confident or educated in disability. Doctors often say “I think you have this” and then leave you with so many unanswered questions surrounding this new potential diagnosis.

I’ve learned to laugh in the most unfunny moments, make the most out of bad situations and I have shown my mental strength and resilience is important above all. I think I’ve become incredibly calm. In situations where perhaps someone else may panic or be overwhelmed—for myself—relatively these things often feel ‘small’ and I’m therefore pretty good at staying calm.

I’ve sadly had to grow up a lot quicker than my peers, but I also think that I’ve become much more understanding of other people’s emotions and gained a level of emotional maturity as my priorities have had to shift being unwell.

My diagnosis list is ever growing. Tourette’s Syndrome hit me out of the blue at 19 in my first year of university. I lost my speech out the blue for two weeks when I was 20 following a hemiplegic migraine which replicated a stroke.

Nothing surprises me anymore.

Honestly, if you don’t laugh, you’ll cry and that’s the best way we’ve found to approach my illnesses. It went from “why me- it’s always me” to “only me, typical” making a positive out of a negative or light and laughter out of an awful situation is very important. As chronically ill people, we often joke that we are unqualified doctors.

I truly believe the sheer knowledge that having a chronic illness has taught me is fascinating and perhaps something I would not have delved into had I not become unwell. I like to consider myself a receptionist or admin assistant to my own body—I appreciate my disabilities for supporting my love of stationery and organization—I bet you’ve never seen paperwork as organised and colourful as mine!

As kids we always get told not to talk to strangers and to some extent, I agree. However, had I not found such an amazing online community through Instagram I wouldn’t have found InvisiYouth, its Global Brand Leaders Program, or other content creators with disabilities. I’ve spent hours messaging other people on the internet .

Speaking to people online is such a powerful tool in management of disability. I’ve found many of my consultants through Facebook groups. My Rheumatologist who diagnosed my EDS was recommended through a Facebook group. My sleep consultant was recommended by a few people on Instagram. My cardiologist similarly.

It makes me feel like there’s loads of people like me. People who just ‘get it’ but can also support me in my journey and answer any questions from the perspective of poorly people not just as medical professionals.

The feeling of bumping into people who follow me on Instagram brings me so much happiness. The few times I’ve been approached in the streets after my pink wheels have been spotted from a distance on days where I’ve been struggling or having issues with accessibility- it makes all the appointments and the hours of pain worth it.

In that moment you feel less alone and feel like what you’re doing is really important. It’s comforting to know when you have a weird symptom that your doctor has never seen before, that there’s someone on the other side of the world who has it too and has a little bit of wisdom that might help.

  • I suggest having a list of all our conditions, medication, allergies and care needs summarised to take to appointments is incredibly useful, it really helps save time in appointments too. I used to get really frustrated when I felt like most of my appointment was spent covering medical history and less on my current issue.
  • Don’t be afraid to tell doctors or medical professionals what you need! You are an expert of your own body!
  • Find your people- there are people out there for you, who will understand you, support you, and think like you. Put yourself out there! People will put effort in and people will make time if they want. No one is ever too busy for the people they want to see!
  • If you don’t laugh, you’ll cry.
  • You’re braver than you believe, stronger than you seem, smarter than you think, more loved than you’d ever know and twice as beautiful than you ever imagined

My main message to share: You can do anything you want to do. The world might not be built for disabled people, but if you find the right people and understand your own needs, you’ll be able to access the inaccessible!

Don’t worry about other people’s judgement for any step of your journey. You should be able to live life to the fullest and enjoy it like anyone else your age.

Not all wheelchair users can’t walk just like not all disabilities are visible. Society strangely seems to have taught us the opposite.

Accepting I needed to use a wheelchair in order to have fun/ live life as my peers do has honestly been the best decision I have ever made.

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!