Chronic Illness

The Invisible Side of Invisible Illness

Yes, hello, it’s me, I still exist! My bladder’s decision to stop emptying, mixed with an ambulance, an A&E doctor who had no clue about my illness and ended up leaving my PoTS so bad I’ve still not recovered, a catheter that shouldn’t have been used and a lot of trauma, sent me into crisis 4 weeks prior to my 3 hour exam for the end of my third year of university. I survived the trauma, revision and exam (obviously), and was rewarded with a week away in Paphos with my Mr at the beginning of July. Now I am back and won’t be going MIA again any time soon (Torture chamber’s cooperation pending). Anyhow…

There are many blog ideas whirling around in this little brain of mine, and today I’ve settled on the side of my illness that most don’t see. All of my conditions are invisible illnesses, meaning that people , mostly, can’t see any evidence of the crazy that happens inside my body, all day, everyday. Well, that’s the theory. Really, particularly on the worst days, there’s always some evidence that I’m a spoonie.

Most obviously there’s my wheelchair and crutches, my support splints and the pain relief patch that can be seen peeking out of my top. When I go to see people, the effects of the pain and exhaustion are hidden behind make up. Concealer covers up the dark circles beneath my eyes, the paleness of my skin and lips is hidden by foundation and lipstick, and white eyeliner brightens the dullness that tiredness and pain brings to my eyes. The pale and drained look is only worsened by showering, leaving me lying in bed until the blood pooled in my legs, the cloud of fatigue hanging over me, and glazed look in my eyes have gone, chugging litres of water whilst I wait, effects of my illness that only my loved ones ever see.

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Beneath my clothes you can see the stretch marks that EDS gave to me when I was 14, the tiny silver lines to remind me that my collagen is faulty. There you can also find the many bruises that I am always covered in, without any recollection of how that bruise got there. My skin is thin and fragile, meaning that even putting my handbag next to/on my legs when in my wheelchair, leaves my thigh covered in bruising. Part of EDS causes me to be terrible at judging where things are in relation to my limbs, allowing me to walk into practically everything and leaving bruises to remind me how clumsy I can be. You will also find the scratches and scars from tearing my skin due to the incessant itching I feel from reacting to dust, cigarette smoke, most air fresheners, foods… pretty much everything really. These things cover most of my body, yet stay hidden from the world, beneath my clothes. 

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Stretch marks and bruises. A beautiful combination!

The invisible quickly becomes visible when I have been sat without my legs raised for more than 20 minutes. PoTS becomes very apparent when my legs begin to turn purple, my feet go numb and my ankles start to swell. Swollen ankles were something I thought I wouldn’t experience for many, many years!

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There are other signs, the constant tremor of my hands, the fact I can go from having a skinny, flat stomach, to looking as though I’m pregnant within a few hours thanks to my digestion issues, or the flushing of my skin as my autonomic system freaks out for the fiftieth time that day as I’ve dared to sit upright. The things I always attempt to keep invisible, just like my illness.

Is there a side to illness that your family and friends don’t see? What unexpected effects does it have on your body?

Amie xxx

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