Thursday, October 4, 2018

10 Shitty Things Nobody Tells You About Life With Chronic Illness || #RivetRant

Everyone thinks that chronic illness is a one way ticket to Lazy Town (not to be confused with the children's television series that appealed to creepers on the internet), but it's no cakewalk. Most chronically ill people are working harder to achieve the same results with half the resources, and that's just to survive the day.

Image Description: Cartoon depiction of Rivet Licker, the author of this blog. She is a tired looking woman with short purple/pink hair and has thermometer in her mouth. She is wearing a bath robe and holding a mug of coffee in one hand, and the other is placed on her face. Text reads "Chronic Illness Is Shitty".

I know it's not beauty related, but I don't really want to publish a story with a well known chronic illness website that is pretty crappy to neurodivergent people and rhymes with 'She Fighty'. Better published on an independent platform!

This post comes with a massive trigger warning for lots of swearing, mental health, suicidal ideation, drugs, bodily functions, dismissive doctors, ableism (naturally), financial woes, inspiration porn, flashy GIFs, etc.


I have Lupus. It's a crappy condition and there's no cure. It can be life threatening in some people, depending on the severity; mine only involves connective tissues (muscles, joints, skin, etc), and I also have ADHD and am on the Autism Spectrum, which I have talked about here. Aside from dealing with the unpleasant symptoms, there are so many other things that go on that are just almost worse than having the disease itself.

1. You don't get just one disease.

Sure, you're at the doctors because you've felt off for months on end as a teenager and they finally get some kind of diagnosis. You have arthritis, here's some NSAIDs, go away. Most chronic illnesses, particularly autoimmune ones, much like my Lupus, take years and years to diagnose (8 years for me) then you find out that it isn't just Lupus, but it's also the Polycystic Ovary Syndrome you got diagnosed with a few years prior which now might be Endometriosis, and the Borderline Personality Disorder you developed from dysfunctional environments, and the Raynaud's (basically, I'm not supposed to handle cold things without gloves), and then all those nasty ass viruses that bring you down more often than the healthy population.


2. The treatment is sometimes way worse than the disease.

I can't tell you how many drugs I have to take to manage my multiple conditions. I also can't tell you how many different treatments I've tried (and been suggested by people who think they know more than my doctors, or are just really ableist MLM sales reps). Surely enough, a lot have helped me regain my functionality (and sanity). This one drug I take is a nightmare. It's a chemo drug that slows down my immune response and thus prevents my body from attacking healthy tissues. I only have to bare it weekly (so long as I don't have any viral illness or infection, which means I cannot take it). It helps the arthritis so, so much, but the cost is up to three days of severe fatigue, nausea, fever, and flu-like aches, then we have to pray I don't get the flu on top of it! Then there are the meds to keep my brain chemicals balanced enough so I don't go off the edge. Take the wrong dose and it either doesn't work, or you're off the rails because your heart wants to jump out of your chest and you cannot stop shaking. Forget about sleeping tonight, you're going to sit on the toilet with the runs!


3. It's bloody expensive.

I'm not talking medical costs here. Day-to-day living is bloody expensive because everything a healthy person considers a 'convenience' is usually a means of access. Don't have the energy to cook? Order from Uber Eats. Don't have energy to walk to the shops? Drive to the shops. Can't drive because you're too fatigued? Uber or you're not going anywhere today and that's that. I spend a ridiculous amount of money on food and transport because it's accessible, but access is expensive. I literally cannot use public transport. Buses are just cesspools of pathogens and I'm living proof that if I catch a bus, I will without a doubt get an infection of some sort. On top of my body beating the shit out of itself, I don't need it also fighting off an infection. Having a car is a small price to pay for not having a week stuck in bed.


4. Your life turns into a bureaucratic nightmare.

No one ever tells you about the forms. Oh my god, so many forms. I literally have to fill out a form every single time I flare up. For healthy people, it's a good system, because you usually don't relapse as soon as you get better, but when you're chronically ill, your life just turns into forms and forms and more forms and argh!!! I think there's more work and energy involved in missing a day at uni because I'm not well than actually turning up for class. My body is so unreliable that I have to email my academics every time my body decides to go into NOPE MODE, then rearrange my assessment. And that's another bloody form. Now I have to go see my doctor to get the form filled out. It's repetitive and drives you up the wall. Sometimes you just wonder how you'd fare if you had to work...


5. Finding work is a matter of accessibility.

Oh, here's a topic I love to rant about, why I don't have a "job". I do have a job, it's trying to not kill myself get better, every single day. I wish I had the luxury of going out and getting a steady job that'll pay the bills. I'd love to be able to go into a workshop from 9-5 each day and fix electronic equipment (I trained for 3 years to do that shit). Even maybe, eep, working full time for a beauty publication as a content creator. Basically, I'm a behind the scenes kind of person, so I prefer not to communicate with people directly (just not a retail/customer service type of person). If I ever make to to being a cosmetic formulator/researcher in the medical aesthetics field, I'd love to be able to do that 9-5, but I'm struggling to do my day with 3 usable hours where I have to get all the things done. This is why I am a non-contract freelancer, because I cannot for my life ever commit to anything without things going completely wrong with my health. I hope one day, it'll make me money to thrive and have the creative space I've always dreamed of.


6. Friends/family don't always have your back.

I think my family have come to terms with the fact that I can't do any of the things sometimes. My friends do too. I've become way more distant from social situations lately, and sure, it's a little isolating, but I don't always have the feeling of being alone. Then there are the moments where I feel truly alone and isolated. Who is going to help me out when my parents aren't able to? I'm a 30 year old woman for the love of god, I should have some responsibilities and independence. I think in our dynamic, we're mutually responsible for each other. I also think it's high time we got a carer in to help us out with basic household stuff.


7. Bad attitudes and stare downs.

Oh, the stares are the worst. Why do I have a disability parking permit? Umm, because I have a mobility issue. Sure, it may not be 100% clear, because I'm obviously standing up and walking, but do you know how much my butt clenches to try and keep my hips from dislocating when I walk, do you understand how painful that is? My doctors tell me to walk more, and yet paradoxically give me a mobility permit, and I will tell you why. So, some people use mobility aids like walking sticks (I don't like mine, it's a schlep) or walkers, and some people use scooters or wheelchairs to get around. My mobility aid is... *DRUM ROLL* my car. It has wheels and gets me places, surprise, it's mobile! Remember the public transport thing? Well, parking is scarce in some most places and it's a vital part of accessibility that I have my car and a place to park my car when it comes to going anywhere. Of course I'm going to use the disabled bay, I have a permit that my doctor think I needed. Disability isn't black and white (surprise, some wheelchair users can stand and walk some distances) and just because I get out of my car and start walking doesn't take away the fact that places aren't accessible. I sometimes have to prepare to be stared down and given shit by strangers. Hello, my permit is right there. Time to order bumper stickers and badges that say "My disability is none of your business. PS ~ Don't try to make eye contact, it makes me uncomfortable" and not have to let on that I am actually Autistic and their assumption that I'm uncomfortable is not due to faking. The only thing I fake is being well.


8. Sometimes you can only pass the time.

Nobody ever thought that chronic illness would be boring because you get to lie around all day! It is SO BORING. Ever felt so tired but can't sleep, so you have to just make do with the time until you can sleep, but you can't do anything productive because your brain and body aren't speaking to each other? That's one of the worst feelings, ever. I can't even begin to describe the brain fog and how it affects literally every physiological process ever. It feels like a void with maybe three repetitive ideas floating in there. Nothing else goes in, nothing else comes out. Then there are those times where it is practically impossible get out of bed when you're lying there, aimlessly scrolling, when the sudden urge to go to the bathroom comes up. Oh, and eating! I either forget to eat, or eat ALL THE FOOD, I cannot eat on a schedule, much like I can't do much else on a schedule because everything is so unpredictable. Sometimes I just cannot do the thing, even if I have to.


9. Mental health goes down the toilet.

Have you noticed my ranting coming off as a bit shitty? Yeah, I've always got the shits (figuratively, and sometimes literally). Okay, I lied. I'm not always like this, there are days where I'm less shitty and more depressed, and days where I'm content. I have depression as well, so my mood can fluctuate depending on brain chemistry and what is going on with my body. I've been able to maintain stability for a while, but the lows can become very crushing. They'd usually only last a few days, but for those days, I'd think about ending my life. There are also days where I am okay and am more tolerant of my environments. I've developed a lot of avoidant habits, and while in theory they should help me to avoid discomfort, they actually make things way worse.


10. You're really just doing YOUR best.

I feel like I am not doing enough, and I'm really trying. Little things are hard. That's all.


BONUS ROUND There's a blatant disrespect of disabled people.

When you have been chronically ill for this long, you lose your identity and adopt a new one, a disabled one. Society just doesn't care enough to allow you to thrive. You're expected to do everything like the rest of the population, and when you cannot, you really lose confidence in yourself and in others. The narrow view of disability also contributes to misrepresentation of what a disability looks like. Some disabilities are invisible, some are obvious, some manifest themselves as mobility issues, some as cognitive issues. Disabilities are a spectrum of all kinds of societal barriers in place that keep people who cannot do what is expected of able people from living their best lives. You get the pity party started and everyone feels sorry for you, but then you suddenly do your everyday thing (especially when severely affected by a disability) and people are trying to give you medals and praise for leaving the house, then they simultaneously praise able people for doing nice things for disabled people in the form of basic decency. The worst thing is when the pity party turns into "you've gone overboard with this, please stop complaining". We've been silenced for a long time, so you better be prepared to listen to us bitch and moan.


Forever trying.

Want to check out and support some other chronically ill and disability activists that don't write for "rhymes with 'She Fighty'"? Give these cool people a go.

Carly Findlay - Appearance Activist + Fashion

Jax Jacki Brown - Disability Activist + Queer Champion

Michelle Roger - Living With Bob (Dysautonomia) + Fashion

Ruby Allegra - Disabled MUA + Queer Activism
Instagram (MAKEUP)
Instagram (MAIN)

Can you relate? Let me know in the comments!

This post is presented as an opinion piece. Acquisition of products and/or services stated alongside each item, my thoughts are honest.
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  1. Thank you for writing this post. I can relate so hard, this shit is so difficult to navigate in everyway, and so many abled folks get so pissed off about things they don't understand immediately. Just urgh, also figurative and literal shits is super relatable - and most people can't handle the "gross" aspects of chronic illness, pain, and disability. Thanks for linking to more authors, I'll be checking them out asap!

    1. I’m glad it has helped you! Thanks for popping by.