This is not a ploy for attention. I repeat. This is not a ploy for attention.
So FUCK you for saying it is.
Chronic illness is not something anyone wants. If it were available in-store or online it would sit on those dusty shelves receiving discount after discount. But it would never leave, never find a home. Never ever be sold.
So FUCK you for suggesting I willingly loaded my cart up with all of this shitty stuff so I could grab some extra attention as a bonus for shopping at the store of life.
Can you imagine the product listing on Amazon?
And that listing doesn’t even describe half of it! Who would willingly seek that out and purchase it? The worst purchases are the ones that have surprise additional costs, and T1D definitely has seemingly endless additional costs.
So FUCK you for thinking so little of me. For thinking I would voluntarily jeopardize my physical/mental health and financial security, and that of my family too.
And what if someone were in possession (or they them) of more than one chronic illness? Would you look at them as though they are greedy? Gluttons for punishment, perhaps?
My mental illnesses make me the very opposite of an attention-seeker. In fact, when things become really overwhelming, I retreat. I begin removing myself from both the real and online worlds. I cancel plans, and avoid contact with anyone outside the comfort of my four walls. Esentially, I set myself up for life as a recluse. Even if it is only temporary.
So FUCK you for proposing I sought all of this out.
Little Miss Attention Seeker
Before my multiple diagnoses I knew there was something not right about me. Even as a small child, I was aware of something in me that wasn’t like everyone around me.
According to the doctors, my T1D diagnosis was a long time coming. When I received it at the age of seventeen the doctors said I’d likely had it since I was about twelve. It explained all those times I would get overly emotional and feel near death during excessive physical exertion. It explained those moments my eyes would get blurry. It explained why I was peeing all the time, thirsty all the time, hungry all the time. And tired.
All. The. Fucking. Time.
But before that diagnosis I saw dieticians, specialists, phsycologists, therapists. Because everyone thought there was something wrong with me, even if they didn’t necessarily believe it. And it didn’t help that it took forever to get any kind of diagnosis.
First I was diagnosed with Polycystic Ovary Syndrome. Nothing they could really do for it, but it explained my irregular menstruation. Then I was diagnosed with PDD (back then it was called Dysthymia), and no one paid much attention. It was kind of like a communal nod. And we all simply carried on, as I trucked off to therapy once a week.
To be honest, I don’t think anyone really believed the diagnosis meant anything. Or that it was even a real diagnosis. Probably because they all thought I was “crazy” anyways.
Two-ish years later I received my T1D diagnosis. And that garnered some notice. But still, there were some that simply brushed it off as no big deal. And others who paid it no heed whatsoever because they’re aunt’s neighbour’s cousin’s cat has Diabetes.
Don’t mind me, I just have to navigate being an internal organ and not accidentally kill myself in the process. Oh, and then there’s the whole needle thing. And the fact that I am pretty sure I have some kind of needle phobia!
Following my DKA (and heart attack) came the brain damage diagnosis. My heart stopped for over seven minutes. They were about to prounounce me dead, but I just wouldn’t go. Though, afterwards, I did take a really long nap. And when I finally awoke things were different. But significant chunks of my memories were gone. *POOF* Like, massive chunks of my life were suddenly absent.
In their place: nothing. A void. A collection of unexpected gaps in my timeline.
Even though the doctors said I may get them back, very few of those lost memories have found their way back to me. And that is something I really struggle with. And it creates issues. And there is a tremendous amount of guilt I carry because of it all.
Later came the other diagnoses. IBS/IBD and gastroparesis came after years of tummy troubles followed by three or four exploratory surgeries. Body Dysmorphia came after that. Followed by Insomnia. Then came the diagnoses of General Anxiety Disorder, Social Anxiety Disorder and an official diagnosis of Needle Phobia.
But still. There were some close-to-me folks who thought I was making it all up. Accused me of using those diagnoses to sway things my way. To take advantage of situations and seek out attention.
Sorry that I asked for 15 minutes warning so I could pre-bolus for the insanely carby meal you’re offering, it’s not me looking for attention or special treatment, it’s me trying to manage my disease and be accountable.
Sorry I’m having an anxiety attack, because I have to jam a needle in to my body numerous times a day but this one is hard and I can’t explain why, and I’ve completely fallen apart because something in my brain has set off a fire storm that has rendered my immobile.
Sorry I can’t do that thing today because my body has bloated to the point of discomfort and my pants can’t be done up, and now I have the “bends” and am literally rolling on the floor in so much pain there are silent tears streaming down my face.
Even when they found cancerous cells in my cervix, people thought I was exaggerating. So there was no point in telling them that when I had surgery they actually found more than they expected and ended up removing nearly all of my cervix.
For the record (let this be the record): I have never used any of my illnesses/diagnoses for personal gain, to get my way or for my benefit, and I have never flaunted an illness or embellished how I feel.
Each and every one of my diagnoses cause me painful amounts of guilt. Each and every one of my diagnoses have caused me to miss out on an event or some thing I really wanted to attend. Each and every one of my diagnoses are a part of my everyday.
But You Don’t Look Sick
There are certain illnesses you can hide. Most of the time. There are certain illnesses that cannot help but be seen. All of the time. But they deserve the same respect and understanding.
I really struggle to understand why people feel they have the right to judge other people or why people feel they have the right to comment on or question how another is feeling.
Seriously? How dare you. How dare you snicker, cast aspersions. How dare you suggest that I am trying to get my way when I am hyper-ventilating and having chest pains, as we talk on the phone, and I’ve already told you I’m heading out the door to the hospital.
Our society is so fixated on outward appearance that it permeates every facet of our lives. Including our health. It’s like, if we don’t look sick no one believes we are.
But what does sick look like? Why do we need to prove how we feel? All of my issues (for lack of a better term) are quite easily hidden. In fact, unless there’s a flare up or an issue with an issue, you’d be hard pressed to say there was anything going on at all…
If you can’t see my CGM and insulin pump (and my left forearm tattoos), it’s hard to tell I have Type 1 Diabetes, and you’d never know that I spend my day doing high level math calculations and attempt to moonlight as an internal organ.
If I’m having a good mental health day, and I’ve managed to dress myself, my anxiety and dysmorphia are not visible, you’d never know that it takes me days, weeks, months to prepare to leave my house and that I often panic on my way out the door for an unplanned trip to the grocery store.
If my IBS/IBD and gastroparesis are all in check, and I’m not bloated, you’d never know that nearly everything I eat makes me feel sick and gassy. And you’d certainly never know about any of my menstrual issues or the fact that I’ve recently been told I’m entering early menopause.
If you don’t ask me and my siblings to recall our childhood, you’d never find out that they remember all the things that I cannot recall, things that I cannot even be sure I was a part of, things I cannot even be sure happened, and you’d certainly never know how devasting that really is for me.
Invisibility doesn’t mean it’s not there, it simply means you can’t see it.
No Refunds or Exchanges
The world is big and there are a lot of folks in it.
I wasn’t always so open about the things going on inside of me. I’ve spent most of my life ashamed of how I look and feel. I struggle daily to find the good in me, to make it beyond the borders of the grey zone. But there I am, and I do the best I can with all that I am.
I fight a constant battle while searching to find acceptance for what the mirror reflects back to me. Logic tries to overpower tainted reason. And most days, I I feel like the personification of failure.
I wasn’t always so open about my T1D. But something hit me a while back, I cannot be the only person who feels like this, who deals with this. There have to be other folks with chronic illnesses, mental illnesses and/or Type 1.
And that sparked a need to share. And a want to help people.
Not in a profound way (like my cousin Banting) but a small way. If one person reads something I’ve posted and it helps them, then that’s all I could ever ask for.
The problem with chronic illnesses is that they are, well, chronic. And I don’t mean Snoop Dogg. Those persistent, incurable illnesses are something we are stuck with. Regardless of how they came about and whether other people actually believe they are there or not.
They cannot be returned. And there are no exchanges.