My Lupus is atypical because it is ‘internet typical’

It was vital for me to provide an overview of Systemic Lupus Erythematosus (SLE or Lupus), before I elaborate on my Lupus. Not only because it was a pretty hefty sum of information on its own, but also because you needed to understand about the illness as it typically is discussed. I referred close to the end of the text about how it can vary for individuals in how aggressive it is and the specifics of how it occurs within the body. I did this for a very important reason and that is this:

There is no typical Lupus patient.

There is no predictable or likely progression of milestones for this illness. My illness. My Lupus. There is no standard treatment plan. I know this is true of many illnesses but I am confident in saying although, not wanting to be insulting, most illnesses are vastly more predictable or treatable.

I have been living with this chronic autoimmune mixed connective tissue disease since 2009. That crazy week when I approached my GP (General Practitioner/ Doctor) complaining of pain and lethargy similar to my [then] boyfriends. That cheeky fortunate fellow got off lightly with Glandular Fever and I went through a round of tests and specialists appointments to come out ten days later with a delayed diagnosis of Bell’s Palsy and Rheumatoid Arthritis.

And to think I haven’t even got to my favourite part. The part where I take care of my mother.

But I jump ahead.

Patty, the Rheumatology specialist my GP, Evs, had sent me to had taken a lot of blood out of me. You may have noticed and felt rather unsatisfied at the oblique and vague way I had left my post on that second visit to the Rheumatologist (Patty). It was largely due to the below story intertwining in with it and me wanting to build suspense. (I wonder if it worked?)

Like I mentioned above, everything was happening fast. My mother had worked in the past in a doctors surgery and it was an unspoken truth that if you have a tests that are rushed and you get priority placing to be slotted in to specialist physicians then the situation needs to be attended to as soon as possible.

Shit is getting real.

So, my folks packed a bag and drove to Perth. They weren’t going to send a family representative in to another appointment with me and I certainly wasn’t going in alone, so we would go together. It was a rather pleasant appointment, in my opinion. We walked in. Pat greeted us and spoke of the weather and his view of the river (okay so I may have instigated that). Pat took out my file and the facts just rolled off his tongue. I’m not sure what for, I didn’t then and can’t recall them now. You can guess the words at the end of his breath though.

“The lab results show you have high inflammation and a lot of antibodies in your blood, Jessica. All of the blood work indicates you have an autoimmune disorder called Systemic Lupus Erythematosus and you also have Rheumatoid Arthritis. Your platelet count is okay though, so you needn’t worry about the Idiopathic Thrombocytopenic Purpura. We can see that is just a side effect of this. We will of course be seeing each other a lot as you begin to manage your new medications until we have things under control. Do you have any questions?”

Mum did.

He answered and told us more about both. I guess. I did not really understand what the discussion about my Lupus really meant.

“Okay so I will see you in two weeks, when you have started the medicine. But try not to look this up on the internet just yet. It looks a lot worse than what it actually is online. Especially not Wikipedia.” That sounded so ominous. And like any other adult in a similar situation that is exactly what I did as soon as I got home.

Then we left the room.

In the ten steps to the reception desk my mother broke out in tears. Personally, I felt a weight was off my shoulders. I had been sick all my life with more little niggling troubles than anyone I knew. It was a relief to know that everything had happened for a reason and it may finally become manageable. Even just knowing would make me fight with conviction. My Lupus was clearly the cause of my body destroying my platelets, as well as the red markings on my face and the sensitivity of my skin to bright lights and the sun. It curiously even explained the missing half of my eyebrow. Similar to most other people from 17 to 23 years-old, the gravity of my adult life ahead of me was not of any real concern to me.

Even then, we still really had no idea what the illness was though. How could we?

I mentioned that no two SLE or Lupus sufferers are the same. Some have the acute form which means they only experience one or two minor flares at ‘crucial’ points in their life. Some have one or two ongoing ailments that are mostly manageable with ongoing medications. The internet tends to have a lot of information and personal recounts. I guess this is why I was advised to avoid it. The internet cannot omit anything. If it omits anything then the author is liable for any subsequent consequences. They also need to list any likely or possible outcomes, based on research and records, to be reliable. Textbooks tend to be more reliable, and yet still have gaping holes. The sheer enormity of possible afflictions of my Lupus on an individual is profound.

As the research suggests, there are perhaps over 5 million people worldwide with Lupus and it is not rare. Yet actual numbers cannot be confirmed. Some sufferers will not be impacted by the illness enough to warrant seeking medical attention. Some are not seen by a specialist savvy enough to know what to look for. Many women are trued away simply with the belief it is ‘just a woman’s hormonal imbalance etc’. For some it may only be an acute form or their flares may be spread over a long period and quite sporadic.

What you will read online about individuals experiences, such as mine, come from the typical cases of Lupus. The ones that are bad enough that we cannot sit in silence and exist alone in our pain and emotional upheavals. My favourite description of my health is:

My Lupus is atypical because it is ‘internet typical’ 

This means that Lupus doesn’t often occur as aggressively, long-term or spontaneously as you will read about in This Lupus Life. To date:

My body doesn’t clot

Clots too much

Blood vessels swell and cut of blood flow in my brain

Destroys synovial fluid

Creates too much synovial fluid

Creates too much cartilage for my thoracic cavity

Creates too much calcium in my kidney

Doesn’t know how to transmit neural messages correctly

Cannot filter waste out of my eyes

Cannot close my right eye

Closes my left eye too much

Forgets how to use the left side of the body

Hasn’t regained all of my childhood memories

Demands 10 hours of sleep a night

Is allergic to citrus, aspirin and ibuprofen

Is in the early stages of a codeine sensitivity, let’s see how that one goes!

But it’s my body, and I live in it. It’s where I spend the vast majority of my time. It’s not perfect, but it’s mine.