I knew something was wrong after ‘choosing’ to lay my head down on a rock in the sand on a freezing cold beach in Donegal, rather than attempt the planned walk with the rest of my family. When they woke me 4 hours later, I was confused, frozen and covered in HORSEFLY BITES? I didn’t know such creatures existed, I do now that’s for sure…
Like most of us, my lupus journey from becoming ill to getting diagnosed was long, stressful, painful and HUMILIATING. I had been lucky enough to be referred to a Rheumatologist by a wily doctor, but I will never forget feeling like I was actually losing my mind – my symptoms sounded bizarre even to me – so to have a crowd of white coats stare at me blankly while describing some of my symptoms, and clocking their expressions, left me feeling rather unhinged.
Around this time, alcohol had begun to turn my stomach – which for an Irish girl was very worrying – but I just wanted to sleep. Then went the joints, the headaches, and the increasingly ‘strange ‘symptoms that I struggled to describe. The worst experience to date, was trying to explain what I felt in my head. I told my Rheumatologist and his team; it was like having an electric toothbrush shoved up my nose…Their faces were a picture.
At this stage my bloods were playing silly buggers and had us all baffled. Then came the rash and eventually when the Anti ds-DNA came back positive, I was immediately started on rituximab, steroids and hydroxychloroquine, and many complications later, here I am, a variable pick and mix of autoimmune diseases. They travel in packs with me…
Although I would consider myself fairly articulate (certainly I can stand up for myself), I was reduced to feeling degraded more than a few times at the beginning. LUPUS UK are dedicated to helping and guiding those who maybe aren’t as outspoken as others, or perhaps are intimidated by these doctors. Or for those who often don’t know how to begin their diagnosis journey.
Please do not be fobbed off, the blood tests don’t always show the full picture and I’ve heard of a lot of members being discharged after negative lupus profiles. Some forced to go private. I feel compelled to try to ensure that other sufferers are not ignored or even, I’ve been told, ridiculed. I want to help others with their own journey and get access to the correct care via whatever means necessary.
Lupus is a life threatening; life limiting disease and must be taken seriously from the onset of symptoms, which in itself is hugely problematic as they can vary vastly, I’m alarmed that some Rheumatologists don’t know as much as they should about connective tissue disease..
We need to pull strength from each other’s journeys and experiences, and arm ourselves with as much information as possible and this forum is our platform. We need to use Lupus Awareness Month to our advantage to inform and educate. How many times have we been asked ‘what is lupus again? The skin disease?’
My best friend of over 40 years still cannot grasp why I frequently cancel plans, often she’ll ask why I’m ‘poorly’. Which can be heart-breaking…Other friends and family too, have little understanding.
We all know lupus is a lonely and frustrating disease due to chronic lack of understanding, and it’s up to us to use all our tools and resources to draw attention to our constant struggle with the invisible monster. Posters need to go up in our hospitals and surgeries, bumper stickers, badges and wrist bands, anything that starts a conversation. Anything we can do that helps draw attention to our situation and becomes a talking point. Collectively as a group we can make our voices heard. Let’s use Lupus Awareness Month to our fullest advantage.
Posters and other resources are available by following this link: https://lupusuk.org.uk/order-awareness-supplies/
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