Saturday, 6 May 2017

Chronic Illness Life Lesson Number Five- "But You Don't Look Sick?!?!"

Hello! Welcome back to another chronic illness life lesson, it's been a while... The past month has brought some really big developments (including the diagnoses of Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Chronic Migraines, Chronic Fatigue, Dermatographism, Orthostatic Intolerance) therefore resulting in seeing a more specialists for an array of treatments and investigations.

One of the biggest things that constantly plays on my mind, is just how people whether it be family, friends, or even strangers can have the audacity to tell you that you "don't look unwell". It is one of the worst things you can say to someone with an invisible illness. I understand that it can be so hard for people to understand that first appearances are not everything and that is why it's called an invisible illness. Nobody knows what is happening underneath that smile, blow-dry, or pretty dress you are wearing... They don't see you collapse getting ready as you wash yourself in the shower, struggle to do your makeup because your joints keep clicking out of place and hurting, that behind your smile you are struggling not to throw up but yet you are so incredibly nauseous. Or how just the simplest task of getting ready can leave you feeling like you need to go back to sleep due to feeling so incredibly drained. You won't see the hours of rest and recovery required after just being out for a couple of hours- Looking good doesn't always equal feeling good!
Despite the big smile, I had barely walked without being ill this day!

Invisible illnesses can be hard for some people to wrap their heads around. It can be confusing that someone who you saw looking perfectly fine yesterday, is now too sick to move out their bed. If only they could feel or see what was going on inside!

Of course, there can be occasions, like at the wedding I attended last weekend, when on the face of it, I was a bit of a party queen, I barely sat down and was walking around socialising with others, and constantly had a drink in my hand. Yet, only a handful of people noticed me almost collapse several times, throw up, return a few hours later, or return with a change of outfit. "Do they think I'm making this up?" "Do they think it's because I have been drinking alcohol?" even in my blog post of the wedding, I felt the need to caveat and make note that on one occasion during the day when I was sick I had not consumed any alcohol. Surprisingly for me, I am now used to certain comments by certain individuals who question this. It is like because I am sick I am not allowed to even attempt to enjoy myself nonetheless?!

On the flip side, I do rather enjoy when I am having a good (aka a "manageable symptoms") day, or a few good hours in a day, feeling normal. It can be nice not to feel sick. No one wants to appear sick. It can feel like you have regained a little bit of control back from your life, you decide how you present yourself.

Something I have learnt is that you shouldn't worry about what others think, and whether they believe you or not. Living with an invisible illness is horrible enough there is the pain and stress we already have due to our illness without also having to cope with the cynicism of people who take the stance that you're exaggerating the level of your suffering. It is SO important to remember that you need to do what is best for YOU!

"The Hopeful Chronic"


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