Disability and Optimism Bias
Waking up in a dizzying state of sunlight and the tail end of tranquilizers.
My every morning.
I roll over a few more times trying to coax my body back to sleep. I’m so physically drained and aching…..but it’s also depression too, and I know it.
The morning birds are so intense and sometimes I irrationally grow angry at them, cursing them under my breath as I slip into something comfortable, just a step up from full-on pajamas.
I always want to just sleep one more hour. But, my bladder argues otherwise and once I’m up- I’m up.
The cats whine and pace as they hear me clumsily stirring about the bathroom because their bowls are empty. I can hear my wife talking to a customer or a coworker downstairs and I slowly descend the stairs into the kitchen.
I don’t make eye contact. My body sore from the arthritis and my head spinning from my tachycardia. I’m not human in the mornings. Im grumpy, unfocused, uncomfortable and sensitive.
I wobble around as I grab at whatever is easy to eat and whatever gives me a kick of caffeine.
I have lost my taste for many drinks and foods since I became ill with Dysautonomia. I used to love coffee, now the smell makes me nauseated. I still have no idea why.
I want to be able to tell you about my medical condition, but I’m never quite sure how to describe it. I can tell you that gravity is basically my enemy as it causes my blood to pool into all of my limbs. My heart goes into tachycardia, my blood pressure drops, I grow lightheaded and then I’m like some slow-moving zombie just grunting and groaning trying to make my way around the house to feed.
The kids are back in school now. It’s quiet again upstairs so I take advantage of the bed and whatever show I’m currently on.
I try to do something every day. Maybe I’ll draw, read or write some…but mostly I just sit and dream about doing simple things like going for a walk, hiking, working a job and all the other things I used to do. Yes, I long for the day I can go to a job. In 2019, I’d have given anything to not have to go into work one more day. Funny how perspectives change.
Once upon a time I was roller skating and rock climbing and dancing.
Seems like another life now.
You can’t see Dysautonomia in people, unless you see their pale face, hear the heavy breathing and maybe eventually someone passes out. But, before it gets that bad- we just look weak, dehydrated, tired or even a little drunk.
However, so much is happening underneath what you can physically see and it’s uncomfortable, terrifying and mentally and physically taxing.
I use a cane. People often look puzzled because I’m only 40 and don’t look like I need it. But, it’s either that or I stumble around like a drunk- or worse- fall to the ground or into something.
Sometimes I’ve had to sit down on the floor while waiting in line somewhere. It’s embarrassing. But, it’s either that……or I pass out and wake up to a huge ambulance bill.
It’s the standing. That’s the problem. See, I have what’s called Postural Orthostatic Tachycardia Syndrome (POTS). When I’m upright, my Autonomic Nervous system doesn’t function right. The communication between the brain and heart are at an impasse. It’s dysfunctional. It’s why it’s also called “Autonomic Dysfunction”. Typically your body instinctively knows to pump your blood up and down throughout your body. Like little pipes, your blood goes down into your limbs and is carried back up and circulated through your system. With someone with POTS, their pipes aren’t working right. Your blood can’t fight against gravity very well and it pools at the bottom. So, your heart beats faster to try and compensate and push that blood back up. The longer you are standing up, the harder your heart has to beat. During this process, your blood pressure drops too. Sometimes so quickly that you don’t have time to lay down and you can pass out.
So, that’s more or less it. It’s not a very technical description, but it gives you an idea.
I spend a lot of time lying down or leaning back. I’m afraid to fall, especially because I have this awful fear that something hard and sharp will be in the path of my skull as my body collapses.
Sometimes I have good days and I can do stuff like a bit of laundry or sweeping or changing the litter. But I always have to take breaks. I do a lot of things crouching down or sitting.
I feel embarrassed about it. I know it’s not my fault, but I’m not able to work anymore. I was always taught that you’re not living life right if you’re not working hard and making money and paying bills. “Always be productive, Casey”. It was my mantra. It’s engrained in me and I got a job as soon as I turned 16. Subway…..which is an awful job, by the way.
(Be nicer to your sandwich artists)
Anyways, there’s other issues regarding both my body and my mind as to why I can’t work. Why I can’t be productive and make more money for my family.
I don’t just have Dysautonomia, but also Rheumatoid Arthritis, Fibromyalgia, Interstitial Cystitis, Degenerative Disc Disease, Treatment-Resistant Major Depressive Disorder, Aspergers, PTSD and a whole other range of issues.
My Aspergers keeps me from doing simple jobs like talking on the phone to lots of people or working a cash register. My Rheumatoid Arthritis keeps me from making things with my hands or typing for long periods. My POTS prevents me from doing any job that requires standing or driving long distances. Not to mention the amount of urinating that my poor bladder needs to do because of the Interstitial Cystitis.
Then, I have to somehow overcome all of the physical issues with Major Depression, Generalized Anxiety Disorder and PTSD.
How did I get here? My body and brain are both so conflicted and angry and frustrated. It’s been years of everything just slowly degrading. I’ve already had a Hysterectomy due to Endometriosis which led to Chronic Appendicitis for a year, which then led to an Appendectomy. Several months after that, I started becoming weak with the Dysautonomia.
Are my problems genetic? Most of it. Both my parents have Autoimmune issues. My mother has since passed, but it was due to a pain pill addiction and alcohol. A problem that we tried to help her see, but you can’t convince a Narcissist to do anything they don’t want to do, let alone convince them they are somehow in the wrong.
Having a mother like that causes severe trauma and emotional issues. I’ve been fighting those issues for as long as I can remember. After fourteen different antidepressants and antipsychotics, my psychiatrist and I have come to realize that medication only makes me more mentally unwell, sometimes to drastic and terrifying degrees.
So here I am, in bed, and longing just to get up and RUN. My brain so desperately just wants to move like the wind and feel that beautiful ache of a good workout again. I dream about flying or running or leaping at least once a week. I wake up for a moment feeling free, then….life hits me like an anvil.
I live on disability. Long-Term for now, but I keep hoping the incurable becomes curable and I could just go back to being….normal. Not that I was ever truly “normal”, but I desperately want my body back. No more pain, no more popping Zofran for the nausea, no more feeling faint, no more getting weird looks from people when I’m walking with a cane or riding around in one of those little motorized carts at stores.
Speaking of, people are quite rude to people in those carts. It’s as if how dare I take up so much room in their aisle. They seem annoyed or maybe they think I’m just being lazy and going for a joyride. Just a scrawny tattooed 40 year old with piercings and a messy haircut just being a nuisance. Yep, that’s me. Getting wild and crazy in that ridiculously slow cart I don’t even want to be in.
But, they don’t see an ailment. So many people pre-judge. They wonder why I have a disability placard hanging from rear view mirror and they stare. Am I used to it by now? No, my social anxiety won’t let me.
Why am I writing all of this? It’s because I feel alone. But, it’s also a way for other people to try and see another’s perspective. In the past I’d always heard certain people who were disabled talk about life being difficult when people can’t physically see their disability. How often they are judged or criticized. How often their friends and family dismiss them and their needs. Maybe it’s because you have a good couple of days- so to others that somehow means you should always be able to function at that level. Then you crash and burn and can barely function at all. And, if you aren’t living with that condition, you can’t understand what’s happening inside that person.
I never much paid attention to what disabled people went through before I got sick and I’m sorry I wasn’t more empathetic years ago. I was like so many of you who, due to not having the personal experiences needed, just didn’t understand what it’s like to be living in a body that can’t function correctly. You can’t imagine the cost of not only countless medical bills, but the cost of one’s ability to just live and get up and get through the day. Some days it takes so much will and strength and it feels like you’re in the heat of battle while everyone around you is just running along merrily about their days.
Maybe I’m writing this as a plea for others to try and understand what it’s like living with an invisible disability.
Maybe one day someone with a loved-one who’s disabled will finally listen and hopefully start building the empathy needed to truly support that spouse, friend, child or family member.
Maybe they stop feeling resentful or suspicious, or worse….not believing them and in their disorder.
I never thought I’d be here, but most disabled people never thought they’d be here either. It’s called “Optimism Bias” and it is “a mistaken belief that our chances of experiencing negative events are lower and our chances of experiencing positive events are higher than those of our peers.”
It’s what leads people to drive drunk, to drive 90 miles an hour on the freeway, to keep smoking, to keep people from telling others that they love them more often because they just assume they’ll see them again. It makes us do and feel idiotic things because we humans think only the REALLY bad things exist outside of our tiny boxes we call “life”. We are selfish creatures- until something bad happens to us.
And to all of those who are disabled and connect to my words- you are seen, you are heard, you are loved.
That’s all. Now I’m off to another doctor’s appointment. Another shot in yet another joint. One you won’t see….