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 Meghan Smith

April is National Donate Life in America, and it’s a critical time to raise awareness on not only to become an organ donor, but also to learn the stories of those that have received this lifesaving transplants. One of those receipts is Maryland native Meghan Smith, a marketing executive that has used Instagram for our favorite thing…raising awareness, changing misconceptions, and showing how awesome and fun life can be with any health struggles. After a few years of health issues, it was discovered Meghan had liver disease and was in need of a transplant. Luckily, her uncle was a match to donate a portion of his liver! Meghan is such a transparent advocate because she shares the realness of post-transplant life, and all the medications and adjustments you make in life to adapt and excel. There’s no singular way to look or live as a young person with health struggle, and Meghan–who’s now a Donate Life Ambassador–is using her growing platform to give a fresh look on how incredible , fun and fulfilling life can be!

My name is Meghan and I am a 29 year old from Baltimore, MD. I work as a marketing executive for a global affiliate marketing company, and in my spare time enjoy traveling, reading, shopping, playing with my dog and spending time with friends and family. Growing up, I had a fairly normal and typical childhood. I lived in the suburbs outside of Baltimore with my mom, dad and younger brother, was active in dance and softball, and was generally healthy.

When I was 19 years old, I was studying at the University of Maryland when I started to develop abdominal pain and severe itchiness. I spent most of my college years going to different doctors trying to figure out the cause. Finally, at 22 I met a doctor at Johns Hopkins who determined the issue was caused by my liver. Around this time, my younger brother was 19 and started developing similar symptoms. For whatever reason, his liver disease had progressed much faster and he was in liver failure with liver cancer. He was listed for liver transplant and thanks to the generosity of one of my dad’s previous co-workers, received a living donor liver transplant at the age of 21.

I continued to be monitored by my hepatology team, and while numerous genetic tests were done to try to figure out the cause of our liver disease, there was never a match. In August of 2019 it was determined that it was time for me to be listed for liver transplant. Numerous people kindly reached out about being tested to be my donor. My uncle was the first person to undergo testing, and surprisingly he was a perfect match! It is very rare for the first person to be tested to be a match.

On December 10 2019, I received the amazing gift of a second chance at life thanks to my uncle donating a part of his liver to me.

Overall surgery and recovery went very well for the both of us. I spent two weeks in the hospital and was able to go home on December 24th, just in time for Christmas.

Unfortunately, two days later I developed an infection and had to be re-admitted to the hospital. Because my brother had gone through transplant before me, I was aware that transplant recovery is a process full of ups and downs along the way.

Once I was released from the hospital, I continued to recover and adjust to my new post-transplant life. This included taking a large number of medications multiple times a day to avoid rejection and infections, monitoring my vitals every day, and getting blood work multiple times a week.

I gradually built up to walking more often and getting out of the house more frequently. I was able to return to work at the end of February 2020 on a part-time basis, working up to full-time over the following months. I am incredibly lucky to work for a company that has been so supportive throughout my entire transplant process, and makes the health of their employees a priority.

Post-transplant I became a Donate Life Ambassador to help educate others on organ donation and encourage them to register to be an organ donor.

I’ve found that there are still many myths and misconceptions around organ donation and it is not discussed nearly enough, especially within my age group.

Almost 114,000 people in the United States are currently on the waiting list for a life-saving organ transplant, and on average 20 people die a day every day from the lack of available organs for transplant. I’m one of the lucky ones who received a transplant, and am inspired to help make the waiting list smaller and smaller until it is eventually 0.  

I’ve been using Instagram as a platform to share my transplant story and educate others on what it is like being an immunocompromised person during the COVID-19 pandemic. I think it is helpful to see that while someone may look “young and healthy” this may not always be the case, and to put a face to the people whose lives can be saved from following social-distancing measures and flattening the curve of the spread of coronavirus.

Throughout my transplant and now the COVID-19 pandemic, I’m often asked how I remain so positive given the circumstances.

My answer is pretty simple – I do what I can to protect myself and keep myself safe, but don’t worry over the things that are out of my control. I would offer the same advice to anyone who is feeling anxious during this time of unprecedented illness and uncertainty; do the things that have been recommended – wash your hands, stay inside as much as possible, practice social-distancing – but don’t let the thought of contracting the coronavirus consume you.

Take comfort in knowing you are doing everything you can to protect yourself and others, and use this time to practice self-care, pick up a new hobby, or do something you enjoy.

 

10 Year Throwback and Chronic Illness Memories

September 28, 2019

This blog post was originally written for our friends at Diversability! A big THANK YOU to Diversability for featuring me as a guest blogger. I am such a fan of this social enterprise that is truly reshaping the way #disability is discussed and how we can generate positive opportunities for the disabled community! You can read my article below,  OR make sure to check it out on Diversability’s blog page here, and like/comment!

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With 2019 coming to an end, it’s easy to feel like time is passing by quickly, and we can wonder if any of those goals or resolutions we set at the start of the year are coming together. That is an even larger concern when you are living with a chronic illness because there can already be some self-doubt of not achieving goals.

As someone living with chronic illnesses, I understand how we put this pressure on ourselves because there’s an immediate fear our health setbacks will be the demise of our goals.

After my tennis injury igniting my chronic illnesses almost eleven years ago now, I worked so hard to find the balance of striving for success while maintaining my ‘new normal’ of health.

But as the years continued, I felt the ‘what ifs’ creep into my mind. That worry if I would be more successful or happier if I never got injured and had the subsequent health constraints that are sometimes part of my day-to-day.

But something quickly happened that turned my mentality on its head.

I discovered a young adult chronic illness advocate YouTuber, someone that would become a friend and future philanthropy supporter of InvisiYouth Charity. In one of her advocacy videos, she mentioned she only started to feel a sense of serenity and accomplishment in her life when she took the negative stigmas of “chronic illness life” out of her mindset.

After watching, it was as if a light bulb went off and that guilt I put onto myself seemed so obsolete.

Why was I judging myself for things I couldn’t control?

Why was I automatically assuming if I had to adjust my goals for life, I was ruining my dreams?

Why did I look at my dreams as out-of-reach because they weren’t going to be on the same timeline as my “healthy/able-bodied” friends?

This is the truest fact for life with chronic illness/disability, and has become one of the major pillars of InvisiYouth’s mission: a life with chronic illness and a life of success/happiness ARE NOT mutually exclusive.

I can live every day with my chronic illnesses AND still be happy and successful. My life goals aren’t lesser than just because my health isn’t the stereotypical norm.

There is a framework in the media and society that if you have a chronic illness or disability, people must feel either sympathy for your struggles or inspiration by your daily act of just living. 

It is that negative connotation that causes us as the chronic illness/disability community to view our goals as harder to reach.

And while yes, there are certain things I cannot do any longer because of my health, that doesn’t mean I cannot adapt.

That doesn’t mean I cannot take a few more steps and add a bit more time to still achieve my dreams.

One of the best life lessons I’ve learned is somewhat of an analogy to cooking. Life shouldn’t be a shot in the pan, it should be a slow burn, allowing all the flavors of our goals to marinate.  We don’t need instant gratification, or a microwave fast-track to achievement.

We don’t need to scale our wins in life based on what others can achieve. Let your goals and dreams take their time to reach their full potential, and when you get out of that negative mindset and become proud of your life WITH chronic illness/disability instead of being angered by it, that is when serenity can be found.

So now, as I look at all my goals–personally, professionally, and with InvisiYouth Charity–for the end of 2019 and going into 2020, I won’t look at the unmet goals with sadness or worry, but instead, I will let it fuel my fire to figure out new ways to adapt my steps and continue moving forward.