Invisible Illness, Visible Me.

I was 13 years old when I first learned that I had JSLE (Juvenile Systemic Lupus Erythematosus), and from that moment, lay in my hospital bed, a thousand and one wires pulling at my skin, my world did not just turn upside down, but was erased and rebuilt. I was no longer certain of who I was. I was now Lupus Jade - sick, fragile, and very much at risk of everything and anything thrown my way.

I spent many a month from that moment lay in a hospital bed. My 14th birthday was celebrated with a homemade cake, a handful of family members, and a chorus of nurses who lamented over how awful they felt for not being able to throw me a proper party. It took rigorous physical therapy for me to walk again - something so simple, yet so terrifying. Every literal step forward was a metaphorical mountain climbed, and whilst my classmates were making academic leaps and strides, I was relearning the basics of myself. The new ins and outs of my life: how to adapt to medication, the triumph of overcoming my once rigid fear of needles, the lingering fatigue that no sleep could ever cure, what immunocompromised meant, and why it could be the death of me.

I went through a 'lifetime rehabilitation' until the day I was released from hospital, reborn to a new life.

And whilst the illness itself comes with its struggles, at 23 I have learned to adapt. This is my new normal. I no longer know what 'truly healthy' means but I am at peace that this is me. The problem, however, lies elsewhere.

My illness is invisible.

To onlookers I am a young girl. To the elderly lady on the bus, I am a rude young woman who won't give up her seat. She can't see how the fatigue affects me. She doesn't know that I am fighting for my way home, that my legs are shaking from strain, that my body is so overtired I feel physically sick. She doesn't know that after a busy day, I need the next to be free, to lay in bed, to allow myself to be in pain. And though I try to understand her point of view, I am filled with resentment regardless. I am judged because I seem capable, and without physical evidence, I am nothing more than a defendant on trial every time I step away from the safety of my home.

Invisible illnesses aren't often talked about. Before my diagnosis I didn't know they existed, and still to this day have to remind myself that I am not lazy, I am not a liability. My body has limitations, whilst my mind has ambitions. I will never be able to work a normal 9-5 job. Reasonably, I will have to work from home, so that when the illness hits, I am safe and able to look after myself. But this isn't the norm, and the whispers are often louder than you think. Stigma is hard to ignore when it is all around you, harder so when you begin to believe it yourself.

I am reminded of the first time I returned to school after three months in hospital. My legs were still very weak, and so I needed a wheelchair to get around. A friend looked at me with anger, and told me that I didn't deserve such a privilege. That a family member was much worse off, and that I was milking it for attention. Attention was the last thing I wanted. Never before had I wanted to be normal, as invisible as the symptoms that plagued me. This statement, one said in the midst of childish ignorance, has haunted me since. It whispers to me whenever I inconvinience someone, whenever I have to cancel plans, or rearrange life to fit accordingly into my Lupus Life schedule.

Despite my affliction, I am still a person. My illness is a part of me, one that I can never change, control, or discard, but it does not define me. I have dreams that I am putting all of my limited energy into achieving. I have finished a degree at university, I have fallen in love, I have acquired skills, knowledge and desire, and I have absolutely no plans to stop. My body is limited, but my spirit is free, and as long as I am breathing I will not cease to chase what makes me happy. I am the same as you, I just need a bit of help here and there.

So please, the next time you see a 'healthy' person in public, no matter what they are doing, swallow your anger in the same way I and all of my chronically ill friends do, and give us the benefit of the doubt. You do not know what the person in front of you is dealing with, and at the end of the day, they are human. Compassion is free, and will keep your mind at ease.

Invisible Illness, Visible Me - J. F. Hadfield

I am pale skin and bruised eyes,

yawning mid-afternoon,

no lullabies.

I am a story that twists,

and turns, retrospectively,

exciting, yet I yearn for stability.

I am a power ballad

sung in a whisper,

afraid of being heard,

quiet and cocoa-bitter.

I am sweetness melting

in the sunshine,

cheerful, rich, nauseous,

like red wine.

I am in sickness,

never health,

not wanting glitter,

but craving wealth.

I am a definition,

undefined,

a gemstone,

jeweled, polished, refined.

I am you in all ways,

just physically restrained,

I am human, a movement,

I deserve to be named.