Spotlight Story Program: Sophie Ward’s Story

Meet Sophie Ward

When life brought health challenges into British 24 year old Sophie Ward’s life, ending her dreams of trying out for the 2012 London Olympics, she used her fighter athlete spirit to get to the bottom of her struggles. After a diagnosis of Lyme Disease, Sophie not only focused to improve her health, but worked around the UK with Parliament, on radio/television, and with her blog to bring awareness to Lyme Disease education and prevention. She’s a kind and passionate young women, inspiring others to find their inner empowerment. And as an InvisiYouth Global Brand Leader, Sophie uses her advocacy and philanthropic skills to bring positive change to our international older youth crowd. 

In August 2008, my family and I travelled to Beijing to watch the Olympics. Many of my friends were competing in the swimming events and my dream was to reach London 2012, so it was a perfect opportunity to soak up the atmosphere, support my friends and learn what to expect. Once the Olympics were over we decided after traveling all that way it would be silly not to sight see. So, we did! We were lucky enough to go to the Panda sanctuary and it was AMAZING.

Here is where my nightmare started. I began with a fever after seeing the pandas. I was treated at the time with 48 hours of antibiotics which seemed to do the trick.

On returning home, I was forced to give up my swimming career due to nerve damage after an umbilical hernia operation. I felt lost. The years went on and my health declined; weight loss was the result was increasing food intolerances, migraines, joint pain, muscle weakness, blurred vision, confusion, muscle pain, fatigue, insomnia, temperature sensitivities, itchy skin, rash, nausea and so on. There seemed to be a new symptom every week. I saw doctor, after doctor, after doctor. All of them passed me on to the next or called me crazy.

I was losing the will to keep fighting. Was I crazy? Was it me? My family questioned my health too. Sometimes asking me directly if I was the cause of my health issues and to ‘snap out of it.’ How could I ‘snap out’ of something I zero control over.

2017 began and after going to the hospital for food intolerance tests, the consultant suggested I  see someone who specializes in CFS (Chronic Fatigue Syndrome) as at lot of my symptoms matched. The consultant gave nothing away at the time. He just told me to do some blood samples so I did, and returned a month later for the results. We were shocked. I looked at my Mum confused, she grabbed my hand.

I knew for so long I’d been struggling but I still coped. Feeling a bit off didn’t mean I would lay in bed all day. My professor read my results out to me. That stated I had very active Lyme levels and Coxsackie virus. Along with Epstein Barr virus and Herpes 1,2 and 6. At first, we thought FABULOUS a diagnosis… how do we cure it?

Then Lyme disease and the other viruses were explained to us. This fight would be for life, a life-long struggle. The fight would become my life.

I returned to my GP (general physician) with the results and they told me I was crazy, I had an eating disorder because my weight was so low, and I would have to suffer with a ‘chronic disease’ for it to stay so low. They told me my results were false because they had been carried out above and tried to section me. The consultant however, couldn’t find any grounds on which to section me. I was perfectly sane.

I did try inpatient help on my own accord for my eating. It was an utter disaster! I lost 5.5lbs in just 6 days! They starved me on a liquid, low calorie diet and then bombarded me with everything I was intolerant too. I was so sick and hungry. I was forced to discharge myself. This proved to my GP it wasn’t me, it wasn’t my fault and I was perfectly sane. This battle will be is endless and there is no rest.

My health journey has made me PASSIONATE about helping others who are going through similar situations, trying to raise awareness about Lyme disease to prevent people from going through this hell.  A cure, even though we fight for one everyday is a long way of yet. Prevention is key to save future generations and loved ones from the disease at this point.

I am part of the Lyme Discussion UK Administration team and work closely with my local MP (Member of Parliament) to raise awareness on Lyme Disease. I hope my journey and story inspires many who suffer with a variety of chronic illnesses and that we never feel ALONE OR INVISIBLE as our illnesses can often make us.

I strongly believe knowledge is power, so I continue to learn and gain knowledge through meeting people, talking, listening and reading.

People are the best form of lessons and knowledge. Listening is SO important, people relate, people feel less alone and less alien. We pick up hints and tips, look down different paths and doors open.

My work with the Lyme Discussion Group has helped me understand the political fight we face, meet likeminded-people, gain advice, knowledge and FRIENDS. In my work, I have offered support to people who no longer want to keep fighting. My family has fought to have signs and poster placed around Residential and holiday parks across the country and I have my local MP fighting and pushing Government for better tests, treatment methods, research and awareness information.

I am also a Global Brand Leader also work with InvisiYouth Charity!

I hope to make friends, gain further knowledge and help people like myself who often feel LOST, worthless and crazy. I hope to inspire people to find a purpose when there doesn’t seem to be one and celebrate all the victories and pleasures in life to boost our moods and keep us fighting.

And my blog, Sophantastic, has been my own personal journal. A journal to store my research, new knowledge, treatment stories, personal struggles and medical issues with the world in hope that others can relate, and we can find comfort in not feeling alone in our struggles.

I won’t let the world change me, I must change the world. And I must change the world to become more accepting.

So many of us have battled years with feeling like we are ‘alien’ and don’t belong. Just because we are poorly it doesn’t mean we can’t reach our dreams, we can’t make a difference and we are crazy. Our dreams and goals may have to be altered but the constant ignorance and dismissal in the health industry for people with chronic illnesses and chronic disease is not acceptable or healthy.

Society needs to learn to not see our weaknesses in a negative light but as stepping stones to learn and gain strength from. To add power to our strengths. This simple change would help improve lives because everyone knows a strong mind is the best weapon.

My life with Lyme Disease has inspired me to become the stronger person I am today. I have felt pain beyond my limits and become grateful for every moment.

It has taught me that nothing can hold us back, only WE hold us back. We have the power to change the world, empower and inspire people all around the world.

All of Those Exhilarating Peaks and Mega Excitements of My England Travels for InvisiYouth Charity

August 31st 2017

I recently took a trip to England all in the name of expanding InvisiYouth’s new programs and meeting with some of the amazing InvisiYouth supporters we’ve come to love and support over the years and charities we’ve admired for a while.  We have heard from some many of you that you wanted to hear all about my trip, and how I was able to handle all of that travel.  Now…I cannot give too many specifics about our new programs because we’re in development (and really, what would the surprise be if we told you everything before our prelaunch)!  But I can certainly share all the behind the scenes of my England trip and travel.

There are two big reasons why I wanted to make sure InvisiYouth made its way across the pond to England as our first major international InvisiYouth trip. One was the fact that England has been the first and most overwhelmingly supportive community since the day we launched.  The first teens and older youth with chronic illness and disability to follow InvisiYouth were all British.  And the first charities to reach across and want to lend support to InvisiYouth’s mission were from the United Kingdom.

That support network has continued to grow during our two years. We’ve even had an InvisiEvent in London last autumn, proving that InvisiYouth reaching beyond geographic, we are designed for older youth and can reach them anywhere!

The second reason to go to England was due to our Charity Friend role in the first Superhero Series Triathlon.  This was England’s very first adaptive disability triathlon, where people of all ages, disabilities and illnesses could compete in swimming, running and cycling with as much support and adaptive equipment as needed.

With the backdrop of the 2012 Olympics venue of Dorney Lake, the event was going to be unlike anything experienced before.  And with InvisiYouth having a group of teams all competing on behalf of InvisiYouth to fundraise for us, we had to make sure that we were there supporting them on their amazing job well done.

I have to say, what made the experience of bringing InvisiYouth even further into the UK even more special was that I was able to bring my entire family over with me, and getting some awesome memories of family time included in the work trip.  When life gets so chaotic and crazy, which can easily happen owning a charity and almost 25 years old, it is special to make memories with your family.

These are the people that have been my support system throughout my entire life, and even more than most families because they have become my rock throughout my health struggles.  Going through a chronic illness, growing up and finding myself as an adult with health struggles, is more complicated and challenging than any amount of words can describe.  But it has been my family that has help pull me through all the complexly stressful hardships that having RSD and EDS can really bring into your life.  I am thankful for them beyond belief, for their love and devotion, and their support of InvisiYouth Charity and our mission!

The England experience was an amazing opportunity to meet with individuals and charities who are going to be part of this new, evolving chapter of InvisiYouth Charity as it expands its advocacy education with our new tools and programs.  These illness lifestyle management tools are going to be the backbone of InvisiYouth where our events and speaking engagements will feed off as we continue to grow in the years to come.

I have always said that InvisiYouth’s focus is the age demographic in the illness/disability community, not the specific illness or disability, and we focus on the nonmedical side of the medical experience.  There are so many facets of life outside of illness when you live with one, so InvisiYouth cannot be more excited to provide support to help these young people live life and navigate life with illness so it can be fun, empowered and fulfilled in all its unique, adapted ways.

It is important for InvisiYouth to have more than just supporters in the UK, we need to have partners and lead volunteers in these other regions in order to engrain and expand the InvisiYouth tools and mission.  So it is completely obvious that these British older youth and charities will become part of our expansion and part of the InvisiYouth family. I am literally ripping at the seams wanting to share with you how fantastic each of these meetings were, how amazing these people are, and how completely overwhelmed with joy the InvisiYouth team is to know these organizations are going to be part of something we’re creating.

It is a massive THANK YOU to the always dedicated nonprofits like Once Upon a Smile, English Federation of Disability Sports, The Mix UK and CP Teens UK.

It is a gigantic THANK YOU to the empowering and fearless leaders like Sarah Alexander, Chloe Tears, Catrin Pugh and Emma Franklin.

There were even so many other British older youth and charities that we didn’t get to meet in person but we are going to be connecting with through the powers of technology and Skype now that we are back in the states.

Now, coming off such a successful meaningful and fun trip, we gotta break down the peaks and pitfalls of travel with a chronic illness like RSD.  I always joke that the pain and symptom peaks feel worth it when the experience is so worthwhile, and going over to England and creating these connections to expand InvisiYouth’s work even deeper into this nation was worthwhile.

Sitting on planes for almost nine hours straight doesn’t work well with RSD, so you must accommodate to your medical needs.  Getting medical documentation from doctors about being about to move around plane, to have people required to sit near you to help if side effects arise, all important to have.  And if you’re like me, and you are partially bionic like I am with rods and screws in my spine, then it’s always a good idea to have a medical letter notifying your metal (titanium or not) because it’s best to be safe when you’re going through airport security.

Make sure you have your own checklist for your medical needs (like medications, adaptive equipment, and what I call ‘checkup tools’).  I always like to make sure that my staple backups of support like Tylenol, KT Tape, bandage wraps, mini heat packs, resistance bands, and much more.  And you gotta make sure your wardrobe can match too.  Bringing additional layers when I deal with my limbs going too cold, shoes that can adapt to swelling easily, and dresses with slits so I could easily bring respite to my knee.  All these fashion tips made my travel easier.

But a major savior for me was timing.  I had to make sure my schedule was planned with work, with touristy stuff, as well as my medical rest time.  I had to make sure that when I was travelling, whether on a train, a cab, an Uber ride, or even a plane, that I was using my off-time wisely to recuperate from my symptoms to make it through each day.  And when I had resting time at the end of the day, it was all about heating, massages and elevation.  When you put time into your travels to focus on your health, it actually becomes a true travelling vacation and fun experience.

Yeah, when I got back to the states I had to put in some additional PT sessions, resting time and acupuncture, but with some focus on how to combat travel with a chronic illness, you can get through anything and ease what can be a setback on the return home.

Truth be told, I think England is now going to be a staple trip for Team InvisiYouth each and every year!  And while we’ll be having a team of supporters in the country year-round hosting and supporting all things InvisiYouth, I’ll be making sure that the UK is a top priority visit for us as we grow.  Not only did I love the people, culture, architecture, and cities, but I loved how warmly InvisiYouth’s mission and belief system was received and that deserves lots and lots of more England trips to come!

So…where will I be heading next for some InvisiYouth fun and work?  You’ll have to check out the InvisiYouth website for next month because we’re crossing country borders yet again!

~Dominique