Friday, 22 January 2016

My Lupus Story

I have finally gotten round to writing in the "About Me" section of this blog. Here, I will share what I wrote on that section:

My name is Atlanta and I live in England. This is my lupus story:

Nine years ago, when I was 22, I was diagnosed with lupus and myositis. I did not know much about these strange disorders; I had heard of lupus before, because I had read about Kelle Bryan's battle with lupus, but I had never heard of myositis before. I did not know anyone else going through the same thing and I felt very alone. I felt very odd and strange, as if I was the only person in the world going through this. 

I was given a brief description of what I might expect in the future: joint pains and swelling, possible organ damage, overlap illnesses, migraines, extreme fatigue and muscle pain. These were the symptoms I was already suffering with (mildly at that time). But it slowly started to intrude into my life, work and studies and I found myself struggling to keep up with the rest of the world. I worked hard so I could have enough money to go out nearly every night and party all weekend. I would self-medicate by drinking alcohol, which only made things worse because it aggravated my mental health problems. Slowly, over the years, my condition progressed. Other symptoms emerged; worsening of my depression and anxiety, migraines that did not respond to meds, skin rashes, weight loss, dizzy spells, fainting, medication side effects from steroids such as manic moods, water retention, acne, infections, insomnia, 'foggy  and insomnia; I remember the night I spent in the bathroom cleaning it at 4am in the morning.

Lupus is notoriously difficult to diagnose and it often takes several years to finally get diagnosed. I had experienced symptoms since childhood, but these were always dismisessed as growing pains. This is despite the pain being so bad in my knees that I would be screaming and crying in pain all night long. I cannot even begin to imagine how horrible it was for my mum watching her child suffer in this way and not being able to do anything about it. Sometimes, the doctor would be called out to see me, or I would be referred to various specialists from childhood, right through my teens and early adulthood. No-one thought of testing me for lupus, and instead blamed my symptoms on depression, psychosomatic illness, pregnancy (I have never been pregnant in my life and when the doctor suggested this, I was in the middle of my monthly!), hypochondria, growing pains, or being an attention-seeking lazy teenager who was simply trying to get out of going to school or work. 

After years of testing that revealed nothing, the doctors gave up. I began to doubt myself. Was this pain real? Were the three-day migraines that had me wanting to bash my head out on the wall fake? Was the red butterfly rash on my cheeks real? Our bodies are designed to tell us when something is wrong by sending us pain signals. My body was in pain and my body was trying to tell me something; it was in distress. It is a frightening thing doubting your body and mind because you stop trusting yourself and your body. I did not even know who I was at times; the person staring back at me in the mirror was a stranger. 

When I did finally get the diagnosis, I did not handle it well, but there is no 'right' or 'wrong' way of dealing with a diagnosis. You respond to it in your own way. Everyone is different. It took years to get my diagnoses and although I felt vindicated by the diagnoses, I felt like a label had been stuck on me and I was a lupus - a label that nearly took over my entire identity. I was no longer 'normal', and I put a lot of effort into faking normality; I pretended that I did not have to take 35+ pills everyday; I pretended that I did not have to see specialists for rare conditions most people have never heard of. But no matter what I did, no matter how hard I tried to ignore my symptoms, my symptoms continued to grow worse. The pretending was exhausting and I was burning myself out with the effort. As I got older, I realised that I could not run away from the awful reality of my illnesses. My life was changing. My body was changing - the creeping fatigue, the increasing frequency of flares, the side effects of medications, being in chronic pain and the growing list of additional overlap illnesses. I felt alienated from my body. The illness and medications changed my physical appearance and aggravated my mental health problems. My body image and sense of self were being swallowed up by the sickness. I hated my body for what it was doing to me and for a while, I indulged in various destructive behaviours.

Because lupus is an invisible illness i.e. you look well despite the lupus munching away at your body beneath the surface. People tend to associate sick people with wheelchairs and other visible signs of illness. In lupus, where the only visible sign might be a butterfly rash on your cheeks (not every lupus patient gets this rash), people might disbelieve that you're sick. I used to question myself, "Am I really as sick as I feel?" Sometimes, even I doubted that I was sick at all, despite my symptoms and the horrific physical pain.It took me a very long time to realise that my suffering was not in my head and so, I felt vindicated when I eventually received my diagnosis. I was not exaggerating or pretending; what I was going through was real. My illness is invisible, but still present.

At the time of writing this, I am 31 years old. Over the years, I have experienced much and have learned so much about my illness and myself, and more importantly (because this has saved my life), I started connecting with other people who were going through the same thing online. I no longer feel like the only person in the world going through this. I have met so many inspirational people who blow me away with their strength and I have also made many new friends, who I consider as friends for life and beyond. It has taken me a long time to bring my suffering out into the open. I have learned that hiding my illness made things worse. Why was I so ashamed of my illness? I soon learned not to be. Becoming ill is not your fault. Life throws many challenges and surprises at us and it is often difficult to keep up with. All you can do, as the cliche goes, is take things one day at a time. We cannot predict the future and we cannot predict what our illnesses may do to us. I am trying to learn to live in the moment
I write my blog and run my Facebook page because I want to people to know that they do not have to go through this alone. No-one should go through this alone. 

See and for more info about lupus

The World According to Lupus on Facebook:


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