I'm still perplexed as to what sick looks like. Or what the threshold is as to when you're allowed to say you're sick? And who is the final judge? Are Randy, Keith, Nicki and Mariah going to come to my house and judge my performance? Will Nicki give me a bizarre nickname? Will Randy call me "Dawg".
The fact is that not all illnesses are visible. You can't see diabetes or asthma. You can't always see cancer. A person's suffering cannot be judged by appearance or even diagnosis. Each presentation is unique to that person. As is how it impacts on their life. A twitter friend recently mentioned the hierarchy crap that goes on in cancer support groups. What the hell is wrong with these people? Though I strongly suspect that patients who devalue another patient's experience would be arseholes even if they weren't ill. Having seen similar issues in the Dysautonomia and EDS community at times, it is clear that being ill does not inoculate everyone against developing a bad case of, Being a Dick.
I am told not to dwell on my illness and conversely that I need to educate people so that they may better understand my experience.
I am told to get out more and conversely that if I'm out and about I can't be that bad after all.
I am told to brush my hair and put on some lippy to feel better and conversely told that I don't look sick.
I can't win.
Should I post only sick photos on this blog or Facebook page? I could do that.
Oooo look I'm in hospital. Unbrushed hair, sexy hospital gown,
and slightly deranged look. I must be sick.
Would that convince you?
Or maybe a picture in of me in my wheelchair, Bernice.
OMG inappropriate sick person, be more dignified and inspirational.
Some days my outside belies the dysfunction that is occurring within.
Ooo look I'm dressed, my hair is brushed and I have put on lippy. I must be fine.
Should I have to carry a portfolio of sick photos on those good days to convince you?
Should I have a handy list that describes all my symptoms, medications and the way it all impacts on my, and my family's, life. Bullet points so you can assess my worthiness at a quick glance.
The reality is I have disorder that isn't always easy to spot by others.
I'm sorry if that offends your sensibilities.
I'm sorry that for the 10 minutes you spend with me I don't meet your expectations of sick.
Illness is part of my life. A big part. But I don't have to carry a placard to announce it to the world just to appease your limited thinking skills.
Does that clear up the confusion?
Stupid me for not wearing my incapacity on my sleeve.
And then I am hit with an attack from the flank.
Yes I write a blog about my health and the experience of being ill.
Yes I have a Facebook page dedicated to this blog where I can chat with the community that has sprung up and post inane jokes and take the piss about my experiences.
For some that means I concentrate too much on my illness. Again I can't win.
And yet I do have a life outside of illness.
I paint. I cook. I garden. I love scifi. I am addicted to The Walking Dead. I love music. I have a family. I am a sad dog person. I love sarcastic jokes and black humour. I enjoy a good laugh even when it ends with my passing out. I have watched Zombieland so often that I can quote large sections of the movie by heart. I love vintage fashion. I love re-purposing furniture. I am team Dean. I love hanging out with my best friend, singing 80's ballads and solving the world's problems. I love the smell of books, the real deal, none of that Kindle crap. I want a farm and a chook house. I eat brown sugar out of the jar and have been known to pick out and eat all the the white marshmallows in the bag.
One train of thought tells me if I do all that, I can't really be sick.
One train of thought tells me if I don't embrace all that, I am dwelling in my illness.
Damned if you, and damned if you don't.
I don't care if you think I am sick enough.
I don't care if you think I dwell on my illness too much.
You don't know me or my experience.
You have a glimpse into my life nothing more.
There is no face of illness. There is no look you can pick out in a crowd.
The pictures above represent aspects of my illness and life. But are hardly representative of me as a whole.
The underlying disorder is still there, it's just that sometimes the packaging changes.
It's not my fault that you can't understand that.
And it's not my job to educate you.
That you can't understand says more about your lack of imagination than it does my life.
That you need to judge me says far more about your lack of compassion than it does me.
Imagine what you could achieve if you re-directed all that energy into simply being a decent human being? Or perhaps, shockingly, focusing on your own life.
You may not be able to spot my illness, but I can spot your lack of character at 100 paces.
You may not like how I live my life and deal with my illness. But. Well. Frankly, I couldn't care less.
Now excuse me whilst I go and continue living my life.
There are wheelchairs to be bedazzled, and Daryls to be sighed at.