As Lottie sits down for our interview, she seems very different from what I had imagined. She looks nothing less than the picture of health, but that is only what my eyes can see.
Charlotte, also known as Lottie, suffers from Hypermobility EDS (Ehlers–Danlos Syndrome), a rare genetic condition that causes the joints of her body to be loose and unstable, which can cause dislocations.
“I love animals!” she says while playing with her cat, “They can cheer you up when you feel low. Is that the crazy animal lady side of me coming through?” she laughs, breaking the ice between us.
I start by asking general questions about her illness. “EDS has changed my life dramatically. Nothing is the same. It has ruined many dreams, but opened amazing new doors!”
At only sixteen, Lottie was diagnosed with joint hypermobility. Though she reveals it was a relief to finally have a diagnosis, “It was hell not knowing what was going on with my body. A diagnosis gave me a sense of direction. When you are diagnosed you feel so alone, but then you join communities and get to know so many people that have it.” she says.
“Knowing that even when I feel at my worst I can still make others smile is the best feeling in the world!”
All her life, Lottie has suffered with constant pain. She tells me what it’s like living with EDS. “My life is so different from most people my age. I need help around the house doing most things. I use a wheelchair all the time and my joints can dislocate whenever, making every moment highly unpredictable. I am unable to work or go out alone and I have to plan everything ahead. I can’t pop to my local shop when I run out of milk. I have to wait until someone is with me.”
When asked how EDS affected the people around her, she replies with disappointment, “Some friends walked away. It was very difficult for my family to understand my needs. They tried to get me to do a lot of stuff I wasn’t capable of doing, assuming it was for the best. It just made me feel worse.” She is quick to add, however, how supportive and encouraging they have been despite this, keeping her spirits high and making her feel like anything is still possible.
As Lottie continues describing her life to me I realise that, to my surprise, Lottie has managed to come to terms with her situation. “I am a firm believer that you are only given what you are strong enough to deal with. I am one of the very few that has been unfortunate enough to have EDS, however I am strong enough to handle it.” she says.
I suddenly realise that Lottie is just like any normal 21-year-old girl. She just wants to enjoy her life. She is very mature, free-spirited and kind - she wishes to help people with similar problems. Through social media, Lottie has been trying to raise awareness about her condition, as well as campaigning against bullying. “My condition is invisible, so to the naked eye no-one would know what is wrong with me. I have been victim to verbal abuse for walking differently and being in a wheelchair when I am out,” she says bitterly. “Bullying is disgusting! And it can kill, literally! I know people who have taken their own life because of bullying.”
“Do not judge people because there isn’t something visibly wrong. A lot of chronic conditions are invisible to the naked eye.”
Later, I ask her about what her dreams and aspirations are. She says that she wants a normal life with her family and her long term goal is to get married and, if possible, have a child. “My boyfriend has sacrificed so much for me and he always makes me feel like I am the most beautiful girl in the world,” she says smiling. As for her plans for the future, she wants to launch her own charity and continue raising awareness for EDS.
As we finish our interview, I think about how admirable Lottie is to have overcome her difficulties. Talking to her has really made me reflect on my own life and appreciate all the things I have.
Before I go, I ask Lottie for one piece of advice. “Never be afraid to be the person you really want to be.” she says, “The only person who can make you 100% happy is yourself. Always believe in yourself and don’t allow the thoughts of others to control your actions.”
If you wish to learn more about Lottie or get in touch with her to help raise awareness, go to her website at www.edslottie.com or search ‘edslottie’ on Facebook, Twitter and YouTube.)
“EDS has really pushed me past my boundaries and made me appreciate all the small things we take for granted.”