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.

Why Mental Health is Important to Our Brand: Health=Health

with Guest Contributor Brittany Foster

June 27, 2017

Every so often, I get told, “It must be so hard to have InvisiYouth focus on physical and mental health. They are completely different.” But that couldn’t be further from the truth!

My response…health is health, regardless of it focusing on the mind, or the body. In fact, I have always been a firm believer that you should encourage youth to always take care of their health and talk openly about any struggles or illnesses they face. And that does not mean these should be different conversations. If s someone goes into a hospital for IV treatments, everyone around them would show empathy, understanding and feel somewhat of an ease asking questions. But oftentimes that same courtesy does not apply to an individual going to talk therapy for their mental health struggles.

What is not seen goes without support or conversation and THAT NEEDS to change! What I like to say is that this: the way we respond to illness, particularly the distinction between physical and mental health, is taught at a young age. When we are sick, our parents as us, “Where does it hurt? Show me where it hurts.” And we immediately point to the parts of our body with pain and symptoms. The notion of SEEING illness is engrained into us, and that resonates as an incorrect ‘common sense’ for life. People immediately associate illness with the physical, with being able to see it, to notice symptoms, but when it’s invisible, whether psychologically or physically invisible, it’s a concept we have a hard time grasping.

At InvisiYouth, I explain that we should have our teens and young adults explain their illness in a way that makes them comfortable, never feel forced to show their illness. If we explain symptoms and not show them, people will begin to give empathy because someone will explain their illness, and relate to the description. Don’t show your illness, talk about it!

For InvisiYouth it’s simple…health is health, and illness is illness. It does not matter whether it is a type of cancer or cystic fibrosis, PTSD or bipolar disorder, these are all different health struggles that young people need to adapt, improve and live with in their lives. And since we are a nonprofit that supports teens and young adults with ALL chronic illnesses to navigate life with illness, to gain the tools, knowledge and support to live fun, fulfilled youthful lives, InvisiYouth is always going to extend itself to teens and young adults with health struggles of all kinds (physical and mental, visible and invisible).

And I must say, it truly makes me beyond thrilled that mental health is being discussed more in a positive and accepting light. It’s slowly losing the taboo status, even in the two years since I launched InvisiYouth Charity.

It warms my heart to see so many teens and young adults in the community confidently talking about mental health and invisible illnesses, addressing the struggles they face, their different types of treatment plans, and advocating for awareness and improvements.

But as the conversation grows, as it begins to dissolve the stigmas, we are faced with another issue: the misconception that mental and physical health cannot be discussed or treated as one in the same. I know from InvisiYouth’s community that especially with the teen and young adult population, physical and mental health struggles coincide quite often.

With InvisiYouth Charity, we want to raise more awareness and understanding surrounding the idea that physical and mental health struggles can go hand-in-hand. That a lot of young people living with physical chronic illness also have to work through different mental health health illnesses and hardships. It should not be a shock that when young people are dealing with chronic illnesses that it takes a toll on them emotionally.

One of the young adults we’ve worked with from the very beginning knows this firsthand. Brittany Foster, one of our OG Spotlight Story Program writers, lives with conditions such as congenital heart defects like right aortic arch and large VSD, and pulmonary hypertension that has affected her physical in a variety of ways. But she also discusses openly that the emotional toll it took resulting in her also dealing with Post Traumatic Stress Disorder.

“The thing with trauma is, it doesn’t just leave,” Brittany says.  “You can’t just get over it and you can’t just move on that easily. There will be periods of your life when the trauma and emotion and and strong, and there will be periods of your life when it’s the farthest from your though.”

This is such a true factor that many people, both professionally and in our spoonie personal lives, do not comprehend.  That when you go through such traumatic events with your illness, and the procedures and diagnoses that you receive, it begins to build up and can affect your mental health if you do not get proper help or treatment.  Brittany talks about this duality stating:

“For me, PTSD also looks like a girl who is a pro at doctor appointments. The girl who has everything together and can explain her medical needs and diagnosis without hesitation. It looks like walking out of the doctor’s office completely fine and then going home, only to spend hours crying about what appears to be nothing but is actually every single emotion that you wanted to feel in that office flooding out all at once.”

When people can notice your physical illness, they can discredit your mental health struggles, making them seem to be of lesser value or importance to treat because it is not seen.  But in reality, without a strong mental health, your physical health can also take a toll.  Even worse and more confusing at times in when your physical illness is not even visible, like I had to live with for many years during my teens.  Often my friends could not see my illness, all I could was describe my RSD, but it wasn’t visible and that built up struggles I worked through.

Many teens and young adults with chronic illnesses, like Brittany, have to live in this duality of illness, that they need to be supported as a whole person with struggles affecting their physical and mental health.  Whether it’s talk therapy, writing, the arts, sport programs, or even integrative programs like meditation…finding a right fit is critical for success.  At InvisiYouth, I often will tell young people and their support networks that we will find the types of activities that will help improve one’s mental health while also accommodating the barriers that certain illnesses bring.  

“Finding ways to deal with my traumatic moments has been difficult,” she says. “I do a lot of work through writing, talking openly about it with people I trust, realizing that I am accepted for all those parts of me, and talking through it with people who understand what it is like to live with a chronic condition that can be life threatening.”

Brittany also found sharpened her voice through her experience with PTSD, finding a way to become a strong medical advocate not just for herself, but for so many that follow her journey. She is a prime example of motivating young people to be open about their illnesses and struggles, to learn from their experiences and shine this needed light on the way mental and physical health are perceived. Brittany and I must think alike because she said something that resonated with me, especially as I sat to write this month’s blog post about InvisiYouth’s dedication to mental health awareness and support for the young adult and teen community:

“What keeps you moving forward through all the trauma and the emotions, should be the fact that you are HAVING these emotions. These feelings mean you are actually LIVING.”

I could not agree more with this idea, that even with all the pain (both emotionally and physically) a young person may feel during their medical journey, it is important to know that having those feelings means you are moving forward, you are fighting for ownership and improvement in your life! I often say that you cannot treat the whole individual without looking at their physical and mental health, so it is vital to treat all of a person.

A person needs both their body and mind to succeed in life, to have fun and be fulfilled, so it’s time that charities, companies and society as a whole take notice of this and support health as a wide spectrum of illnesses, both physical and mental, invisible and visible.  What you cannot see is just as important as what you can see!

 

~Dominique