Like Howard Beale, I too am mad as hell!
Yes, I know you’re sick to death of my incessant rantings against the unfairness of life, growing old and of being sick!
Again, (and this means you too “Anonymous”) if you don’t like it, don’t read it!
I get that my tirades are becoming boring and empty and that nobody really fucking cares anymore… if they truly ever did. Whatever; that doesn’t stop my need to… “NO,” my obligation to speak out.
“Choosing with integrity means finding ways to speak up that honour your reality, and the reality of others… ” ~ Terry Tempest Williams
Like it or not, this is my freakin reality. I didn’t ask for it! I don’t want it… but “it” is my life now, I have no choice; I’m obliged to speak my truth!
I don’t rant just for me… I rant for all of the others as well; the others that you (you who are fortunate enough to be healthy and well) don’t know anything about! Please don’t misunderstand, I don’t criticise you… I used to be YOU!
Now… I’m with them. I’m with the ones who sit, by themselves, on a couch and suffer in silence; the ones diagnosed with some weird, obscure, auto-immune disease that nobody’s ever heard of and that has since turned their lives into a living HELL.
For all you know one of them could be your kid’s “frail” teacher, your “A-hole” boss, or that co-worker who’s always taking time off of work.
There are a lot of us out there who don’t want to be “a bother,” or any “trouble” to our family or friends. All of us who, when asked, “How do you feel?” will always respond, “Fine, I’m fine…”
The poor suckers, like me, who were unlucky enough to roll out of bed, one ordinary morning and have the god-damned day turn out to be ANYTHING, but ordinary!
I speak for them… you want to know why? Because some of them, are too sick, tired, frustrated and fed up to speak for themselves. They’ve been beaten down, by a relentless disease that kicks their ass 24 hours a day, 7 days a week, every month, for years!
Some of them have just stopped trying.
They’ve stopped trying to explain to you, that they are not lazy. They are not seeking attention. It’s not all their head. They know adopting a more positive attitude, won’t really change a damn thing.
When they’ve told you they were “exhausted,” they meant that they were physically, mentally and emotionally unable to connect with any reality, in any real or pleasurable way. They were spent, depleted, drained, emptied, burnt out, unable to connect.
Did you hear them? Did you listen?
Many of them, who have been stuck in this cyclone of shit, for a very long time… feel that you don’t hear them anymore or that you even care… so why should they bother to speak at all. Better to save their energy for more important things.
When you say things to us, like;
“You don’t look sick,”
“Maybe if you just go outside and get some fresh air, you’d feel better…”
“Yes, I hear ya… I’m exhausted too.”
“Maybe you just need more exercise?”
“It will get better… I’m sure… just push through it.”
“Have you tried….”
…please know, (and I say this ever so gently… ) we want to kill you!
We never would of course, but please know, NONE of these things is remotely helpful or productive.
We have a devastating, destructive, debilitating disease.
Auto-immune diseases are as “real” as a heart attack! They are as real as cancer, asthma, diabetes, COPD, cystic fibrosis, heart disease, Parkinson’s… and all the rest! Just because you can’t see the disability and we’re not represented by a distinguishable symbol like a trendy “Pink Ribbon,” or a cool, coloured, silicone bracelet… doesn’t mean our pain and our struggle isn’t real.
These diseases destroy lives. They come out of nowhere, grab you by the ass; eat you up and spit you out. Your life is irreparably changed.
It’s difficult to pin down the current global statistics, but the National Institutes of Health (NIH) estimates up to 23.5 million Americans suffer from autoimmune diseases. That’s only Americans and the NIH numbers only include 24 diseases. Many auto-immune website say there are over 80 different auto-immune related diseases!
That’s a lot of fucking sick people!
We’re out here.
And hopefully we are (in much greater numbers) becoming mad as hell and not going to take it anymore!
I have fantasies of a REVOLUTION; a revolution where people impacted by devastating auto-immune diseases like Polymyalgia Rheumatica (PMR) and Giant Cell Arteritis (GCA) demand to be heard! A revolution where our GPs and Rheumatologists are forced to take us and our symptoms seriously! A revolution where drug companies are encouraged and incented to look for better, more effective medications to treat and alleviate our diseases symptoms. A revolution where we’re not embarrassed or uncomfortable to openly talk about our disease, and we don’t automatically just make light of it to ease tensions.
A revolution where we have our own immediately, recognisable symbol or brightly, coloured bracelet.
Perhaps even a slogan?
Autoimmune disorders: “Yes, even your body hates you!”