What is an Invisible Illness/Condition? It's exactly how it sounds. You see me looking well but really I feel I look like this..
Have you ever felt like you've fallen from an 80 story building on to your face into a bed of glass only to look in the mirror but still look cute AF that day? It's confusing. Its a head fuck.
I have spent hours paralyzed, unable to move, dribbling from pain fantasizing about killing myself if only I could get up off the sofa.. I get to the mirror..I could have whacked the picture on a dating site. I had a healthy looking flush in my face. I walk around the super market feeling like death, like I my jaw is broken & being punched with electricity, holding my face. People ask 'oh you poor thing? toothache?' and without waiting for an answer proceed to tell me about the time they had a bad tooth & tried some feeble method to treatment which made them feel better....alright Deirdree..thanks for your official treatment plan from your years of medical research on the condition you didn't even wait to know the name of.. I'm sorry but my eye rolled so fucking hard its stuck pointing the wrong way. Sit the fuck down you green summer child...
Life is a daily balancing act. You balancing the mask people want to see, the mask they chose to see & sometimes it's not enough to cover whats underneath but it's still the one they chose to see.
The mask is is there to prevent scaring the ones you love away. Its heavy work carrying the pain & mental baggage that comes with these conditions. I watched my mother struggle with severe back pain all my life, but had no way of understanding how it felt on the other side until I developed a condition nicknamed the suicide disease.The mask smiles to cover what a crumbling wreck you feel underneath. It's a very hard thing to understand if you haven't lived with pain for a prolonged length of time.
While studying Art & Design at Bridgend College, I explored this Twisted Self Image to produce 3 different outcomes. 2D, 3D & Time Based. For my Time Based piece I challenged myself to attempt something I was completely new to. Planning, Filming, Directing & Editing a Short Story called Twisted Self Image: My Daily Balancing Act.
This was a completely new experience for me. It is no secret I am a technophobe. I do not get on well with Technology so this deemed a very daunting task. The clips were filmed mostly over one day & took another day or so of jaw clenching & hair pulling in front of a computer battling with movie editing software. For a first attempt I am pleased with how it turned out.
It gave me a great insight into the work that goes into creating even the shortest movies clips. I hope it gives people who may not understand how it feels to live with a chronic condition/physical or mental.
This mini movie follows me through my day waking up, to getting ready to face the day, socializing, interacting with family & finally the time when you're alone & can take the mask off. I hadn't given a thought to sound until after filming so please forgive the glaring flaws.
My experience, although unique to me shares the same narrative as so many other peoples, just different names & costumes but the general story is the same, the shared
struggle is real. I asked other Invisible Chronic Pain Warriors how would they describe their conditions/pain/experience with invisible pain?
"I wouldn't"
"Suffering in silence"
"If someone has a broken arm, you don't question them because they are in a cast. There are certain illnesses that are not clearly visible. i.e mental illness"
"Soul Destroying"
"It's a war going on inside your head"
"Sometimes I saw it's like flu in my bones or a toothache in my bones"
"I live with a neurological condition that consumes my life. Everything I do I have to consider risks"
"We have the same amount of gas in the tank but my engine is inefficient & runs out faster"
"Spin round & round so much that you struggle to stand up straight, whilst having cotton wool brains"
For me, pharmaceuticals just upset this very delicate balance I need to maintain to keep functioning. Their side effects are not worth the very little, if any relief to my conditions. Cannabis helps not only my chronic pain conditions but also helps my ADHD, anxiety, depression, fibro & recently learnt how it must have been helping me through Aspergic meltdowns over the years as well as provide the much needed pain relief.
To read about my cannabis story, how I discovered the plant & how I feel it helps my life check out Buddy Mary's CannaStory, the first blog published on the site. You can also find out about other amazing women & how their cannabis use helps them maintain a healthy mind, body & soul.
I am always asked about what & how I use to live daily life so I'll be writing a break down about the different modes of administration of cannabis & how/when I use them in the next week or so.
If you'd like your Cannastory featured, please feel free to get in touch. If you like any of the artwork you have seen please get in touch. I am also open to commissions & collaboration.
I really hope this has helped promote even just a little more understanding to those who lucky enough to be free of chronic conditions. I hope it provides relief to those who are afflicted. You're not alone. There's more of us out there than you know & there always support here if you need it.
Take care CannaFam <3
Brilliantly worded insight into living with invisible illness, well worth a read and watch regardless of whether or not you are battling a condition that isn’t physically obvious!
My ADHD and hEDS are at war with each other and God gave me the gift of youthful skin so I’m fighting a battle which doesn’t show on the outside unless you can tell a fake smile from a real one.
And people who know me are new as all my old friends left me behind bar one so noone even knows how athletic and busy I used to be now I’m just reduced to a painful sloth pace of life.
I relate to to you so much thank you for sharing your story beautiful lady xx
Thank you for sharing this with us all, especially the video. Invisible illnesses often tend to become a very private thing, as the constant explanations that often end with replies like “oh it could be worse” “there’s others out there struggling more than you, so count your blessings” “ahhh you’ll be fine” “nah there’s nothing wrong with you really you just need a routine” “a bit of physio will help” “it’s all mind over matter” to name but a few, it leads us to mentally isolate & become reluctant to talk. We’re not looking for sympathy, help, reassurance etc, all we need is for people to understand, learn if necessary about our illnesses & accept us fully, as people with chronic illness who are doing the best we can xx
So sorry you suffer so much lovely lady. Thanks so much for sharing this. It’s so hard I think for those who don’t live with invisible illness/disability to get it.
Totally get the masking too both on the aspie side and not wanting to upset our loved ones. Sending you a shed load of love 💜💚
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