"Where there is creativity, there is hope." ~ Donna Karan

Wednesday, September 15, 2010

Me And My Invisibility Cloak

Harry Potter fanatics can understand the concept of an invisibility cloak. Pop on the magical garment and *boom* - you vanish. Living with an invisible illness is kind of like wearing an invisibility cloak in a sense. Once you get up, get dressed, brush your hair and put makeup on; you conceal the visible side to your profound pain and unrelenting fatigue. You hide the evidence of a sleepless night, the pale skin that's enough to send anybody running down the street screaming "attack of the zombies"; because when you're feeling anything but "normal" on the inside at least you can pass for "normal" on the outside. In this way having an "invisibility" cloak is kinda cool because if I looked like I felt- I would scare you and the real bonus is that I get to choose who I let see me without my "invisibility" cloak on- that way I am in control and I claim some power of which is sparse.

Some days though, wearing my "invisibility" cloak is a big fat pain in the ass, excuse the pun. Most days my pain is invisible, the pervasive overwhelming pain is hidden from the human eye; making it tougher to get support and difficult to describe the degree to which your life is debilitated. Living with concealed chronic pain often means that I feel misunderstood and "invisible", therefore I learn to act the part of being fine. When you suffer from pounding pain and extreme exhaustion- it feels anything but invisible, but to the normal visually orientated person influenced by society's belief that 'what you see is what you get' standing there dumbfounded when you recite your shopping list of symptoms- what choice do I have but to act fine? There are days that my "invisibility" cloak causes me nothing but hurt as people struggle to understand the severity of pain because it does not manifest outwardly. I hate having to pretend that I am fine or explain why I am not when I look like I am. I hate having to try and justify why I had to turn down an invite or cancel plans at the very last minute. I hate having to try and come up with a cool answer to "what do you do?" when I struggle to do anything while I am busy being sick. Managing side effects and just getting out of bed is enough to "do" and some days it is all you can do. I hate being glared at for not giving up my seat on a bus or train for someone who looks "sick", for I am apparently healthy to on-lookers when matter of fact I am just as debilitated, only it can't be seen. Forgive me for not standing a whole twenty minutes because I had cramps in my legs from fibromyalgia or because my joint pain was too unbearable or because I felt unwell from my weekly low dose of methotrexate- the chemo drug. Yes I did just say chemo, but no you can't see the fact that it was an absolute miracle that I even got on that bus.

If you saw me walking down the street you wouldn't know that I had arthritis, fibromyalgia or chronic fatigue and you would probably wonder why I don't work but when I am out I wear my "invisibility" cloak- you don't see the times when I run out of energy from simply blow drying my hair that I am forced to sit down right where I am on the bathroom floor. You don't see the times when I've sat on my bedroom floor in tears because I was too exhausted to do anything else after getting dressed and making my bed. When you see me, you see me on one of my better days- I don't leave the house when I am too exhausted. You don't see the days when my "invisibility" cloak lays untouched in the corner on the floor, you see me on a day when I am able to get up, get dressed, paint my cheeks with some rosy blush and stumble out the door wearing my "invisibility" cloak- the days that are truly miracles.

© Emily Ruth 2010



littlemissmanics said...

Just found your blog tonight. It's an excellent read, but this post in particular is so true!!
I'm sat up reading this in the middle of the night, because I cant sleep because I'm too painful. The drugs to stop the pain keep me awake, and the drugs to make me sleep make the pain worse instead. It's a vicious circle as I'm sure you're aware!

And with all of this, I know I've got a hospital appointment tomorrow where yet again I will be verbally abused because I have to park in the disabled bays, or I cant get to the doctor. I've spent up todays 'spoons' just on trying to make sure that I look somewhere half decent when I have to leave my flat tomorrow, because I refuse to give in to the 'bleurgh' feelings and turn into a perennial slob.
It really is so hard to get people to understand that if you've made your way to an event and are currently talking to someone, then that really IS all I can manage today.
I will be forwarding this page onto a few people I know who have on occasion been known to actually say, to my face, how nice it must be to "have so much free time".
Hopefully the articles on your blog may help to get through to them where I have failed!

Emily Ruth said...

Thanks so much for stopping by I'm glad you've found my articles helpful. It is such a vicious cycle, it just seems never ending!

Blogs are such a great thing though, they have helped me to get through many sleepless nights also.

I think it's important for us to understand that we can't make people understand. They're not going to "get it" unless they experience what we do on a daily basis. I've let go of my expectations of people and I am much less frustrated but I do expect people to at least try and understand and that's my main purpose in writing articles- to give healthy people an opportunity to understand. I totally understand your frustration, feel free to inbox me anytime, always here if you need a chat xx


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