Tuesday, 15 October 2019

GUEST POST by The Kiwi Spoonie // Invisible Disabilities Week 2019

I'm the Kiwi Spoonie, some of you might know me as the blogger and Instagrammer who posts about Ehlers-Danlos Syndrome and chronic illness. On the internet, I'm visible (though still a small-timer!) as a chronic illness advocate, trying to make some noise for silent, invisible illness. 

In real life, however, I'm the girl on crutches that not many people understand. I have Ehlers-Danlos Syndrome, which has caused chronic soft tissue injury and nerve damage in my lower back, affecting my left hip and leg. So I can't walk properly. Nothing really happened to cause this. There were a few events leading up to my back being this way, but it boils down to just plain bad genetics. I was born this way. I can't say "I fell down a skii slope" or "I was in a car crash" when people ask "what happened". 

People see me, they see they crutches and they assume that being a young, reasonably healthy and fit-looking woman, I must have just injured myself and I'll be getting better. When I stumble through an answer that confirms no, I may never recover, I hate seeing their faces drop. I stumble through this answer, because most of what they are asking about, they can't see. It's Invisible. To me, the leg and hip are only a tiny part of my problems. 

Let be give you a few examples of what you can't see: 

CCI - Cervical Cranial Instability

Essentially, my neck is unstable. For me this means that I have nerves in my neck that are being compressed, muscles that are spasming all over the place, and blood flow to my brain being compromised. All because the bones move too much. It's not so severe that I have to wear a neck brace all the time though. And I haven't had surgery, so no scar. You can't see it. But boy, can I feel it. It causes me constant chronic pain to the level that I need opioids. It overbalances me. It further limits my choice of activity. And You can't see it. 

POTS - Postural Orthostatic Tachycardia Syndrome

A common complication of EDS. In brief terms it's a heart that pumps too fast on changes in posture as well as having a nervous system that doesn't react properly to changes like hot or cold whether. It affects every minute of every day of my life. It's had me bed-bound. It means constant chronic fatigue. And no, I don't mean just tired. I can't have a general anaesthetic unless I wan't 8 weeks stuck flat on my back afterwards. And you can't see that. 

MCAD - Mast Cell Activation Disorder

Another common complication of EDS. An allergy condition which can cause me to have a strong immune reaction to literally anything. Though I have been lucky enough to avoid anaphylaxis so far, I have to carry an EPI-pen just in case. For me it means being very limited in what I can eat, breathe, and use on my skin. It also means living in constant fear of the unknown. Imagine eating out and being nervous just because you don't know what brand of soy-sauce is on your chicken? And you can't see that. 

Those are just a few of the things you can't see. 

So when you see someone with a mobility aid and they say they have Ehlers-Danlos Syndrome - please do not assume the crutches or part-time wheelchair is their only hinderance. Every second of every day of our lives is taken up by so much that you can't see. We fight so hard, and we make it look easy. And you can't see that.