Living Is A Chore For The Chronically Ill, & It Won't Get Better Without Systemic Change

Disclaimer: I discuss the possibility of overdose and death. Read with caution.

Everything I touch turns into a hindrance, something my body wholeheartedly rejects while my actual heart sits beating in the background, desperate for the healing of first, losing dance, then veterinary medicine in the same way - ill. ​

Having dream after dream rip at the seams brings a level of intense grief, a longing for what was your outlet, your goal in life, wishing with everything in you that things could be different.

We like to talk about mental health as a monolith, a cohesive 'big bad' we have formed strategies to combat. Medications, therapy - pick your poison, or more than one; they're always the first line of attack. But what about when your body is just as ill as your mind, if not moreso?

Yeah, that's where people tend to get silent. Their eyes glaze over, their smile drops, and they can only manage to spout a few words of comfort - 'I hope you get better soon.' But the truth is, we won't. We typically just continue to worsen until eventually, we get that infinite relief no doctor can provide.

Moreover, we are systemically ignored and belittled, unbelieved and mistreated. We are called drug-seekers and addicts, accused of faking for attention. I would love to know what my reasoning would be for having devastating career losses that were completely out of my own hands, but I digress. We are dying, slowly tortured to death by our bodies, ​and frankly, I'm tired of pretending I'm okay. I'm not okay.

Again, I couldn't resist. It would be a crime not to reference one of MCR's most iconic lyrics.

A Day In The Life

Life as a chronically ill person is honestly dreadfully boring, not to mention lonely as fuck. I don't even have family other than my husband and daughter to rely on for any kind of emotional support, because they've historically been the ones causing my trauma. Yet, people think I must really enjoy 'getting to stay home all the time.'

There is no 'getting' here. There is only 'having.' We have to stay home all the time. We don't have the choice to work like an able-bodied person, the choice to get up each day at our full capacity, ready to tackle the world. We just don't.

Personally, it now takes all my strength just to get up and go to the goddamn bathroom when, just 1 year ago, I was monitoring veterinary surgeries as a career, moving into the work I always wanted to do - the work I am meant to do. I have a bond with animals unlike most others, and it's a beautiful gift that I cherish. I cherished my work in surgery, too. Alas, my body gave it up for me, and a wave of sadness overwhelmed me again, just like when my body stopped dancing.

On top of the pain of losing my life's work, I have doctors at every corner, giving me the runaround and refusing to treat with anything but low-dose narcotics and NSAIDS my body metabolizes much faster than most. My pain doctor even noted how rare it is for him to see someone so lucid so long after pushing Propofol, but that's still not enough for him to realize my body isn't responding to the regimen I'm on.

The way doctors, the media, and the government have treated pain medication has become so restrictive that it's not even being used when it drastically improves quality of life. I'm going to be brutally fucking honest right now, which​ may make you uncomfortable, mad, or both. I don't care.

I would rather die of an overdose than continue living with excruciating pain no one pays any attention to. At least I would die having had my goddamn pain controlled until the end. Doctors like to cite the addiction risk, but that's not how legitimate chronic pain patients tend to work. I mean, we sit and wait for a doctor to help us when, realistically, we could be taking our chances on street drugs since we are such 'drug-seeking attention whores.'

So, why don't we do just that? Well, because we don't want them. We aren't addicts, and certainly don't want to get something spiked with Fentanyl. We just want our pain controlled. There is a vast world of difference between depending on a medication and being addicted, and doctors rarely ever make that clarification unless confronted with it.

So, we force ourselves to get through each day, one at a time, miserable and unable to be present for the lives we used to have - the ones when our illnesses were in control or maybe​ just less severe. Regardless, it is literally torture making someone spend their life in pain that's off the scales, day after day, because they might overdose. Well, I won't overdose, thanks to doctors, but my career is over and I'm in a wheelchair at 35. I guess that's an acceptable life for me, according to them. It's not an acceptable life at all. It's miserable.

So, Where Does That Leave Me?

I spend my days writing when I'm not suffering from intense brain fog, reading, playing video games, and sleeping. The time left between is appointments and medical tests. That's my life.​ That's me 'getting' to stay home all day every day.

But it's not enjoyable. I am in severe debilitating pain day in and day out, 24/7, 365 days a year, unless I'm in a pool, just floating around - but even that leaves me with full-body rashes and other symptoms due to the sun simply existing and having the audacity to shine.

I wish I could stroll along a boardwalk, dance, perform veterinary medicine, and be the person I busted my ass to become. But I can't. Not anymore.

I have no income, no savings, and no remedial action. ​​I simply exist in my own little world, not the real one. Not the fun one.

And I wish it could be different. I wish I could trust my own body to perform tasks I've asked it to, but I can't.

And it's brutally painful, physically and emotionally.

And I'm so tired of fighting.

But I have to continue. I can't leave my family like that.

So I'll stay in my little world, hoping for a miracle that will almost certainly never come.

The Medical Field Needs A Revamp

If universities taught medical students more about chronic and invisible illnesses, doctors would be more equipped to deal with these conditions when they are presented.

Doctors are lacking compassion, empathy, and care across the board. Women and POC, especially, are left with abysmal care and incessant gaslighting from the very people who take an oath to do no harm.

Simply doing nothing is harmful.

I honestly don't know what or how to change it, but there are so many things that could be implemented to give better care, and it starts with patients speaking up, talking about experiences with medical professionals, and refusing to stop fighting for better care for all.

Because we all deserve better.