Now, Where Do I Belong?

There's a part of chronic illness that no one ever really talks about. It lingers in the downtime, inbetween pain medicine and days spent managing symptoms. It's not something a doctor will often talk about - they've got bigger problems - or perhaps, may even go overlooked by your well meaning support group, all who utter that they're for you, and whilst you've no doubt that their intentions are pure, not even they can help when it sets in.

Loneliness.

Often, I feel it when I'm surrounded. I feel it over a coffee with a friend when my legs begin to ache; I feel it at the dinner table, when my eyes begin to flutter shut midmeal; I feel it next to my partner, on my worst days, where anxiety keeps me awake. I'm not alone, not physically, but I am lonely.

I don't know anyone else who suffers from Lupus in the same way I do. The kind I have is a lot more aggressive than most cases - my doctors found me particularly interesting, in that regard. I've searched online forums, spoken to people, read through their stories, but when I put my phone away or close my laptop, I am still alone.

Of course, my friends always take the time to check in on me. They listen to my horror stories. They gasp when I tell them that I was dead, once. They tear up when I describe my pains, the worst ones, where I wake up screaming wishing I hadn't. They sympathise with the fatigue, because everyone knows what exhaustion feels like. But I'm exhausted everyday. I sleep my life away, and hold the horrors that make them wince over my head because I know that one day it could happen again.

They know that, on occasion, I have to cancel plans to look after myself. They do not know that on those occasions I lose myself to my tears, frustrated at a body that will just not work as it's supposed to. They don't know how badly I crave routine, or my bodys fondness to break it. All the empathy in the world, and yet still, they can never know, because they have not felt it for themselves.

And selfishly, in my weaker moments, I wish that they could. But quickly, I shut away those evil thoughts. I would not wish this on anyone. I couldn't, not with good conscious. I reside in a dreamlike state of medicine and mindfulness - I keep myself going with a focus on my aspirations, but even so, I must keep them grounded. I cannot get a job that requires routine, because though I am willing, my body is unable. I cannot feasibly make plans in advance, nor give myself something to look forward to, because when the time comes my body may decide it is unable. I can only commit when my body allows, my mind a prisoner to the constraints of disability.

It often makes me feel as though I do not belong. Secondary school was the hardest, when freedom was at the touch of my adolescent fingertips, but my swollen hand was too weak to grasp it. I have learned independance at a slower rate, but still cannot live independantly. Some days, I need someone to help me cook, others to help me walk the down stairs. I am a liability wherever I go, because I will never know how far I can push myself before I give in.

Is there anywhere I can belong?

My friends accept me, my family loves me, my partner saves me from myself. But they belong to a different world than I, and though they try to keep me afloat, we are in separate lanes.

I belong to those with a fear of missing out, to those who hear my struggles and say, 'I've been there, too.' But where do I belong outside of my illness? I am told to not let it define me, but what else can, when it controls me day-in, day-out?

And that is my secret. I never feel as though I belong. Not really. Not wholey. I do not know if there will be an end, if one day the anxiety will pass and I will allow myself to feel as equal, but if ever a day should come, then truly, I will be blessed.