Day 8 - My Disability

​It is said that babies have no real understanding of the world around them until they turn two. Up until then, they’re just rolling from day to day, building pathways in their brains that allow them to pick things up, point, make deliberate sounds and eventually crawl.

That’s quite a lot to handle right there. Emotional development supposedly kicks in when a child is 2 or 3, and can already do many practical things – feed themselves, talk a little, walk and run and jump. Suddenly they become aware that the other people around them are separate beings, not extensions of their own existence. They start having to deal with other people’s wants, needs and emotions; they are asked to understand rules, to develop a moral conscience and self-control.

No wonder tantrums often begin at this point. It’s a heck of a lot to ask.

I actually remember being this age; not with any real clarity, but as snapshots of sounds, smells, voices and colours.

I also remember the very moment this new higher-level awareness exploded onto the scene.

It was as if I’d spent my first couple of years in a warm, insulated bubble; submerged in muffled sounds. It was like looking up at the surface of the ocean from 15 feet below, dreamily watching blurry shapes and colours rippling soundlessly above…. And then suddenly, with shocking and offensive abruptness, the world came into focus.

 It was loud, busy, too bright, jarring. There was constant movement. People’s faces loomed alarmingly close – looking distorted and alien. And above all, I felt a crushing weight. The world was so heavy. The emotions and thoughts of other people seemed to rush out of a yawning gap in the universe and engulf me. I didn’t know that these thoughts had names – disappointment, expectation, guilt, hope, anger, frustration – but I could feel them pressing down on me, and I knew they were never going to go away again. Trying to push those thoughts back into the dark hole they expanded from would be as futile as trying to stuff a double duvet into a coat pocket.

It’s probably not a coincidence that this is the age I started getting eczema. It was bad. All over my face, neck, hands, wrists, arms… My parents were told by many experts that I would probably ‘grow out of it’.

Obviously, I have yet to grow up. It’s still here.
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Eczema has been my constant, unwelcome companion since I was a tiny child. I have spent much energy and money trying different remedies, creams, potions, and treatments. The worst thing is the roller coaster effect on my emotions when a new cream seems to work like an absolute dream… for about one week. And then I’m back to unsightly rashes, interrupted sleep, dashed confidence, AND I’m also angry with myself for being stupid enough to believe it was going to work.

​The state of my skin is in constant flux – sometimes the eczema is almost invisible, and at other times, I have been hospitalised. I am fully aware that there are people out there with much more severe, life-changing disadvantages, but this is my disability.

My disability is having skin that doesn’t function as skin. Skin that can’t cope with the demands I make on it – after all, it’s just SKIN; it can’t change, like a chameleon, to camouflage me from my environment. This is a condition that frequently brings me to tears, stops me from going out (especially out dancing), isolates and humiliates me. When the mere act of picking up a cup can cause fragile skin to crack and bleed, and Hubby has to gather up my angry, weeping form and put me back together again…then it’s a disability. It’s just so relentless. I know it’s not life-threatening, but the itch – like a swarm of bees, or acid on a burn – hasn’t let up...for decades.

Recently, I have tried a more holistic approach. After all eczema in itself is not a disease. It’s a symptom. It’s a symptom of an imbalance in the body. It’s so frustrating because, like many cases of asthma, there isn’t always a good reason for its existence.

Believe me, I tried dairy free and gluten free diets; I had allergy testing - horrific experience. Couldn’t wash for a week, due to a huge matrix of little metal discs stuck to my back with surgical tape, each one smeared with a different allergen. Result? I was allergic to the surgical tape. Seriously.

I tried Homeopathy. I went to a chiropractor. I tried massage, meditation and aromatherapy.
These things helped. But in the same sense that eczema isn’t a disease, these treatments weren’t cures.

Referring to yesterday’s musings about hard-wiring… I now realise that eczema is hard-wired, not just in my body, but in my soul. My inability to be clear about where I finish and other people begin, has been reflected with perfect symmetry on to my skin.
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After all, the skin is the boundary between you and the outside world. When the skin works effectively, it keeps out foreign bodies, infections and intruders, whilst holding in the various precious liquids our body needs to survive.

What if you’ve never been certain about your boundaries? What if you never learned to enforce a firm line between yourself and others? What if you let negative, damaging presences in, when you should be shutting them out to protect yourself?

It’s pretty radical, I know, but after many years of treatment, frustration and analysis, I have come to believe that the eczema won’t go away until its function is no longer required. In other words, it is fulfilling a need to warn me that I am not respecting my boundaries. When I stop caring what strangers think of me; when I take a stand against disrespect; when I learn to deal with the dichotomy of my two nationalities; when I understand that some things cannot be changed; when I learn to stop fearing failure…that’s when my skin will become whole and fully functional again.

Now, THERE’S something you won’t read on a doctor’s prescription pad.

Here’s a top tip for any readers who suffer from eczema - the conclusion of ‘trial and error’ experimentation spanning many decades; and you can have it for nothing.
The ONLY thing I’ve found has a consistently positive effect on eczema is exercise. True change needs physical energy. A change of state requires exertion, movement, muscular effort, sweating and swearing.

OK. Possibly not the swearing, though I think it helps...

But how ironic is THAT?? If you read Day 7, you’ll know that I deliberately refused to do the one thing that could have eased all my symptoms over the years… Running!