When I speak about my multiple diagnoses and my journey through various doctors surgeries, medicines and physical maladies I suppose I gloss over a lot of the emotions that go on within me. I can recognise that mentioning once or twice that it was hard, or that I have struggled in the past with my mental health does open a portal for you to glimpse how I was feeling without me still not speaking about it directly. It has been a while since much of this occurred and due to reasons beyond my control I cannot recall these facts in great detail, the knowledge of the experiences and the memories that I do have are still so prevalent and strong in my mind.
I will attempt here to talk about those feelings, why I felt them and what thoughts went through my mind. The reason is simply that we all know someone who has been, is or will be unwell. I am not referring to coming down with a strong influenza virus, but something that has caused enough pain or had an emotional impact which has brought the mortality and realism of the fragility of life in to harsh perspective.
For me the rapidity with which I was diagnosed with SLE and RA was overwhelming. If you can imagine I was in a state of numbness. I knew that doctors didn’t get you in to specialists as fast as I was pushed around unless there was something serious happening. I knew this because I had been one of those people who had been dancing in and out of the system my whole life (yay Lupus!) If you go to a doctor when you haven’t been to one for a while you get a tingle in your veins. You feel restless in the way that your mind can only focus on inane thoughts for short bursts of time. I guess that is a small part of why the most successful and common literature in waiting rooms are gossip and lifestyle magazines. Every movement catches your attention. Every sound draws your gaze for a long five seconds and you become that creepy person who is staring unthinkingly into the eyes of that total stranger. They are uncomfortable with this. Of course. Only because they were just doing it back to you.
I was concerned. Make no doubt. But I was living inside of the rotten betrayer which was causing me the life grief. I could not walk away from it, nor avoid it. I could not carry on with my life as it was because a saboteur was ever present to knock me off my platform of contentedness that was my life. In fact I actually had to acknowledge it and keep paying attention to it. I needed to take all the evidence possible to eradicate this foulness, whatever it should be. There was anger, so much anger.
Anger towards yourself never manifests the same way that it does when it is targeted externally. You have a focal point your intellect recognises and longs to attack. sure logical and practicality may step in and boost up your conscience on somethings, but it is so easy to clarify your anger towards an external force. When it is internal it rarely gains the same momentum. It stumbles around, considering how to build up and maintain itself without physically impacting the source of the rage, which is also you. The stumble becomes a trip and in no time you are turned around in the forest. Perhaps you land in fear, either the controllable kind or the one that courses unendingly through your veins and keeps your mind more active than seventeen espresso’s. Maybe you fall through the looking glass and end up walking with yourself, in which case you are both controllably fearful and yet also comforting yourself with positive adages and mantras. A completely opposite reaction is to adopt the devil-may-care approach, which I believe the young ones now refer to as ‘YOLO’ (ugh!)
The fact is that for me I chose not to deal with my body until I was emotionally prepared to. If you can imagine my mind as cake mixture, then I was the dry ingredients. The initial diagnose appointment with the doctor and instigation of taking medicines was the eggs which you blend and then stir into the mix, it was inevitable and yet most of the mixture will stay relatively unaffected. Mixing in the wet ingredients can happen in as smaller portions as you like, but it will all go in.
That is how I chose to process my feelings as I approached and accepted a new illness.
During the synthesis or ‘mixing in of wet ingredients’ stage I would spend a lot of time resting, researching and talking. I would discuss feelings, realistic ideas for short and long term lifestyle changes. I would go out for lots of ‘coffee-and-cake’ dates with my girlfriends. I would also finish all my half-made artworks and writings, crossing them off a well structured list in order of priority and how long they had been half-complete. As I slowly let the guard down between my logical and emotional selves to succumb to the fear of how much I would be losing and changing with the news I was filling soft voids with love, happiness and distractions. Sitting by myself during the initial few months was one of the most important things to avoid as it would set the precedent in my mind for how I perceived my capabilities.
Coming out of my teenage years I was in a bind emotionally. According to a number of psychologists many children search for their identity and independence from their middle teenage years until well into their twenties. So it may even have been inevitable. Add on to that the fact that I had moved from a small country town to the city with only my elder brother to really associate with and absolutely no idea of what I wanted to do in the future and I was flying blind. I acted out like so many young people do in Australia these days, although it is so socially accepted that barely anyone sees it as acting out. I partied, drank alcohol, made friendships with people based on two interests and a conversation at a party. My brothers friends were my friends through association, he let me go to this parties if I stayed the designated driver.
In short I was in no state to handle the news of multiple autoimmune diseases and honestly they didn’t change my behaviour for four years. During that time my parents took me to specialists and there was never any change. I concede I was doing nothing to help myself and it may have been my fault I didn’t improve that much. My mother bought books, did research, found alternative therapists of all sorts. We visited many consultants and tried many things. They did the same things I did, all those hundreds of kilometres away.
Gee I thought they were a drag because they kept on reminding me how my body was failing. I would get upset. Apparently these illnesses were the type of familial traits that are not strictly congential. But still, I was this way naturally. Why couldn’t I have been born with their mutual traits? Both are tall with blue eyes and long limbs. Both have athletes metabolisms and bodies. There is no woman in my family in any direction for three generations back that was like me physically. I was so jealous of everyone and so angry at the fortune that brought this damaged shameful body to me. I was born with a naturally athletic mindset.
Yet I am 5 foot / 155cm tall.
I have a body that cannot bare running further than a kilometer.
I tire after an eight hour work day, or one hour game of netball.
For the first four years after I was gifted with the knowledge of my condition I turned my acting out into a form of challenge against my body. I aimed to find out what would give in first, the body or the will to survive. The way I thought of it I was doomed either way to a half life, so it may as well be the one of my choosing. Go out in style and all of that.
I want you to know I was wrong.
I was acting out. I was reacting to a move before I had even seen all of the players on the board and understood what kind of game I was playing and what colour my piece was.
I want you to know this because I am not alone in my reaction.
I was scared, naive, unwilling to approach with maturity. I wanted to take control of my life as it was meant to be, not adding control of an unruly body on top of this.
I was not the only young person diagnosed with SLE, or any illness, that year, or at all. Yes some people may have their mind in a better place than I did, or even still do. But many will take a lot more than four years to get there.
My mother knew me, but she was learning about this nasty condition alongside me and so it was all new territory. She didn’t deserve my lashing out at her. She stayed by my side, or educated in the shadows awaiting me to approach.
My father knew me, and I kept a lot from him because I was too emotional to share it with him for the most part. He didn’t deserve my moody silences. He waited until I calmed down and asked for advice on how to apologise to ma.
Like any adult that has a functioning relationship, I knew when I had crossed lines and when I hadn’t but should apologise nonetheless. regardless of my health.
I said earlier that I cannot recall much of the early times of my illness. That is because all of the hard times, the anger, sadness, fear and confusion, all of these moments didn’t matter half as much as the people that helped me through them, no matter how far away they seemed at the time.
Each and every one of those times the people were there, I just had to reach for them. That is always the way of it.