She seems very different from what I pictured her to be.
“What a sassy, funny character!” I think
as we sit down for the interview.
She
looks nothing less than the picture of health. But,
that is only what my eyes can see.
Charlotte,
Lottie as her friends call her,
suffers from Hypermobility EDS (Ehlers–Danlos Syndrome), a rare genetic
condition, which causes the joints of her body to be loose and unstable, which
can lead to dislocations.
I imagine that her life must differ a lot from other
people’s.
“I love animals!” she says while playing
with her cat.
“Animals can cheer you up when you feel low.
Is that crazy animal lady side of me coming through?” she says laughing,
and that breaks the ice between us.
I
start asking her questions about her illness.
“EDS has changed my life
dramatically. Nothing has been the same.”
“It has ruined a lot of dreams,
but opened new amazing doors!” she says with excitement.
At the age of 16, Lottie was diagnosed with joint hypermobility.
However, 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. However, it
was also gutting to learn that there isn’t a cure for it.”
“When you are diagnosed you feel
so alone, but then you join communities and get to know so many people that
have it. Suddenly it doesn’t seem so rare!” she says with a smile.
All her life, Lottie has been suffering from pains and aches. However,
it was not until
February 2014 that she became dramatically ill and debilitated from the condition.
“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 day and moment highly unpredictable”, she says.
“I am unable to work or go out alone. I have to plan everything ahead.
If parking is available, accessibility, crowds. I can’t pop to my local shop
when I run out of milk. I have to wait until someone is with me.”
I ask her how her illness affected the people around her.
She replies with disappointment: “Some
friends walked away.”
“It was also 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.”
“However”, she continues “I don’t know what I would do without them.
They have been so supportive. They have kept my spirits high and made me feel
like anything is still possible.”
She keeps describing her life to me and I quickly realise that Lottie has managed to come to terms with her
situation.
“I am a strong believer that you
are only given what you are strong enough to deal with.” she says.
“I am one of the very few that
have been unfortunate to have EDS, however I am strong enough to handle it.
Someone else who is less capable, it would be a lot harder for them, so I am
thankful that it is me and not them.” she adds.
As she is talking I notice that Lottie does not look any different from
other girls her age.
She has the same interests like any other 21-year-old in the world. She
just wants to enjoy her life, but at the same time she is very mature, very
independent and she wants to help people with similar problems.
“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 when I am out for walking differently and being in a wheelchair.” she
says with a bitter tone in her voice.
Through YouTube videos and her social media, Lottie has been trying to
raise awareness about bullying, for the last few years.
“I feel that the bullies are the
people who have something wrong with them. Bullying kills, literally!” she
adds with emphasis.
“I know people who have taken
their own life because of bullying.”
Later, I ask her about what makes her happy, her dreams and aspirations.
She wishes to lead a normal life, with her family, her pets and her long
term goal is to get married and if possible have a child.
“Me and my boyfriend have been
together for 5 years. He has sacrificed so much for me and he still makes me
feel like I am the most beautiful, amazing girl in the world.” she says
with happiness.
Revealing her plans for the future she says: “I am focusing on raising awareness for chronic illnesses and getting
our voices heard. Soon I will be launching my own charity.”
As we finish our interview I think that it is absolutely admirable and
praiseworthy how Lottie has overcome her difficulties.
Talking to her really makes me reconsider my own life and appreciate all
the things I have.
Before
I go, I ask her for one last piece of advice.
She
replies: “Never be afraid to be the
person you really want to be. The only person who can make you 100% happy is
yourself, so 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 and help her raise
awareness, follow her on her social media:
www.edslottie.com
facebook.com/edslottie
youtube.com/edslottie
@edslottie
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