But
you don’t look sick? - That’s the first thing that people usually
say to me when they find out I’ve got Lupus.
But
what is it?
Lupus is an autoimmune disease that can affect virtually
any system in the body. Think of it as a 'self-allergy' where the body attacks
its own cells and tissues, causing joint pain and inflammation, blood problems
and organ damage. 9/10 sufferers are women and there are over 50,000 sufferers
in the UK but still many have never heard of it. Lupus often comes with friends
too. When I say friends, I mean other related illnesses that like to come to
the party such as Fibromyalgia, Reynaud’s and Antiphosphydlipid syndrome – did I
mention you needed a medical degree to just get your head around this disease
as a sufferer?
October
is Lupus Awareness month. If more people were aware of this life
changing disease, understanding would improve and those with lupus would feel
more supported and normal, reminded that it’s not their fault either.
How
are you feeling?
When someone asks me this I do question
myself shall I tell the truth? Most of you wouldn’t even think twice about
whether to be honest or not. But with someone who has Lupus, if you don’t understand
what it is like to have the illness, they can be exhausted by the time they really
explain how they feel. My fine is different to your fine. Imagine a time when
you’ve had the flu, aching all over, not able to get out of bed and all you
wanted to do was to hide under the covers.
Your worst day is my best.
Nobody
said when I was diagnosed after a year and half of not knowing when I was so
ill all the time that it would be so intense.
You have to think
way way ahead of yourself and plan your day, can you be superwoman and get
everything done? Often that’s a no. Just getting out of bed and ready for work,
eating breakfast I can’t face nor that I have time for, just so I can take the
21 tablets I take just in the morning, really takes it out of me. That’s all
before I’ve walked into a class to teach of I’m sure adorable children.
Because
you don’t look ill, you have to be honest with friends, family and colleagues.
And
that’s the hardest to be honest to them when all you want to be is normal for
the day. I hope with the help of funds to increase awareness and fund research
to find a cure will give sufferers like me a chance to be normal for more days
than not. I hope that even if they could find medication to treat lupus not
just suppress the symptoms and give you a ton of side effects and the need for
regular blood tests, visits to doctors. Did I mention that I’ve already got a
busy life being a 24 year old teacher, dancer and young farmer? Having Lupus is
like having a second full time job.
Everyone
in our lives can help and be strong. Together we can help make a difference. If you would like to help us find a cure, make a donation via Lupus UK
