So What Should I say? – #Facebook #multimedia #Autoimmune #WhatdoItellpeople

I was sitting here staring at my facebook page and reading what people had for breakfast, how cute their children look when they are playing in the back yard or the traffic jam on the way to work when it hit me… “What should I say?…”

Do I write about how I started a new drug and its kept me up all night with fevers or stomach pains? Wait, I already mentioned that the last time I got a new drug!

Do I write about how sometimes the pain is so bad that I wish I didn’t have to go on? … that might be a bit ‘too real’ for a morning post and I would probably end up unfriended or blocked. Perhaps I already have been.

I don’t seem to have may things to post that will be ‘palatable’ to my friends and loved ones and wont risk me earning the label of boring, whinging or dull. But here is the worst part. There events are really happening to me. These are the details and steps of my life. But I feel so guilty if I talk about them!!

So I generally go looking for another little joke or a picture of a cute cat and post it instead, hoping that will be OK and earn me the approval of my online world. I feel like a real life Dr Jekyll and Mr Hyde. The life I let everyone see, and then the life I don’t let anyone see. I try hard to hide My Mr Hyde side but he still comes out and he is still there no matter how much we try and ignore him.

You see in this day and age of Multimedia, Facebook, Twitter and Instagram, how the world sees us and perceives us is even more and more important to how much we feel accepted or worthy. So we see people posting the best of themselves and the interesting versions of themselves. We are airbrushing our lives so that the difficult realities are carefully concealed.

Recently the first I knew of a friends marriage break up was that they didn’t appear in pictures together on Facebook anymore. Sometimes someone might post a vague reference to going through ‘something’ and that they will not be available for awhile, but this can mean anything from a flu to major surgery or a death in the family –  but I will never know and I have to respect their privacy. It feels like its not acceptable to share with our friends and loved what might really be happening in our lives. So we don’t.

Since becoming ill nearly a decade ago, many of my new found friendships have risen up from amongst the Autoimmune and Chronically Ill communities that I have met in various support groups. We discuss our challenges secretly and have forged some very rewarding friendships based on a real life understanding of the ups and downs of diseases.  I tell them everything! From what I can and cant eat to what I feel. From what my doctors say to how painful my body is. It’s strange that I can tell a complete stranger these intimate details of my everyday life but not my friends and family. Welcome to the new age of multimedia!

I would dearly like to post about my reality but the only ones who read it are probably my fellow chronic illness fighters. The only ones that ‘follow’ my blogs and ask me how my doctors appointment went are the people I have never met, while the people I grew up with, worked side by side with, loved, helped and shared the best parts of my health with some of them still don’t know what diseases I have and will never even read my blog.

What I am describing is not something specific to me, not at all, sadly its an all too common experience amongst the entire Autoimmune community. We try desperately to wear two identities, the one our friends and loved ones  want to read about and believe on Facebook and the one that only our fellow fighters and closest friends are even aware of. Our Dr Jekyll is to ‘put- on -make -up- and -pretend -everything -is -ok’ persona, and our Mr Hyde is a very brave, hurting, struggling and physically limited person that struggles everyday to do every little thing the rest of the world takes for granted. But the world doesn’t like to know about life long illnesses (physical or mental) yet we could all learn and value so much through learning and understanding.

I started writing my blog to help open doors of understanding between the two worlds. I write with the hope that maybe a little information will trickle through and leave drops of understanding in its path. I write in the hope that by talking about the things people don’t talk about might break down barriers and change mindsets. I write with the hopes the civil rights movements started with. I want to raise acceptance the way that same sex couples do. I ‘outed’ myself some years ago now and started to own my reality and I post some of the gritty truth of my ups and downs. Not for pity. Not for ‘likes’. Not for validation. But in the hope that every time I tell my story, someone learns a little bit more about what its truly like for the millions of others like me.

I still throw in a lot of cute pics of my pets and some choice tidbits from my garden but I have made it my goal to live as authentically and openly as I can and make sure that the ‘image’ I send out to the world is one of someone with respect, dignity, honesty and hope. I cant expect people to accept all of me if I cant accept it myself or if I try and hide it away.

After all I have learned a lot from my friends pictures and posts about some of the hurdles and joys of being a parent, a chef, a police officer, a grandmother, a nurse, and so on and I hope what I do in return is show them a little bit of what its like to live with a chronic disease and how, for me, its is every bit as real and valid as any other peoples experiences.

Gentle hugs,



So I

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