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

Here we are, back again, with a chronic illness post on a platform independent to a problematic website whose name rhymes with 'She Fighty'. Last year, I brought you 10 Shitty Things Nobody Tells You About Life With Chronic Illness, now here are another 10 things that are just as shitty as the last! 

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". An additional purple box is superimposed over the bottom of the image that reads 'now with even more shit! poo emoji'.

This post contains many trigger warnings, including, but not limited to discussion of mental health, dismissive doctors, financial woes, ableism, quackery, bodily functions, hormones, flashy GIFs, and a shitload of swearing.

.

A lot has happened in a year, and getting older is one symptom of life that I have experienced, but there are so many new things going wrong, that it's hard to tell what is what anymore. Is it the Lupus? Is it the PCOS? The ADHD? ASD? Depression?

I have spent most of this year bed ridden. My body feels like it's giving up on me. I'm 31, and in the prime of my life, I should be thinking about anything else than being on death's doorstep, but alas, many people are like me, going down the rabbit hole of poor health, even when trying to do everything right.

1. Every time you get a new symptom, you need to see a new specialist and things get REALLY complicated.

via GIPHY
GIF description: Scene from Star Trek TOS, a male helm officer on the Enterprise bridge is watching the panel, then turning his head to the captain and the caption reads 'the blinky lights are doing weird shit again'.

I’ve been around the loop with all my doctors and specialists. I finally got rid of one - an ophthalmologist who said she was happy with the health of my eye anatomy and said although I have retinal disc cupping, it's congenital and I don't have glaucoma, yay!

You could almost believe one isn’t trying to get better when a new symptom appears. Doctors are having to play mystery illness bingo with each other. Chronic illness doesn’t get better, not with positive thinking, not with snake oil, it doesn’t work. A good doctor will investigate further, but be warned, you might end up with 10 different doctors!

I see all but one doctor through the public system. In Australia, there are public health clinics that bulk bill, and many doctors who have private practices. The private appointments can cost up to $300 per visit, depending if they're an initial consult, or require special procedures, and you're lucky if medicare pays back 85% of the schedule fee (it's too complicated to explain). The public system just takes the pressure off people who are on low incomes, such as myself, but the drawbacks are the waiting times and the bureaucratic nature of the clinic - you might not see the same doctor every time, and things just get very complicated.

2. People will give you unsolicited advice on everything.

via GIPHY

GIF description: Scene from Kindergarten Cop, Constable John Kimble (Arnold Schwarzenegger) is in the classroom where he is pretending to be a teacher and is yelling 'SHUT UP' to the class.

Have you tried...?

Have you been tested for...?

Were you vaccinated as a kid...?

Have you seen a...?

Maybe your medications are making you sick...?

You need to get out more... No, not like that!

If you have ever suggested things like getting genetically tested for MTHFR, herbs or supplements, essential oils, CBD oil, acupuncture, keto diets that skyrocket cholesterol, you need to just shut the hell up and stop pretending you’re a medical doctor and know what's best for me. Shhhh!

I have explored all available options already, in all facets of medicine and lifestyle!

3. Going out is hard.

via GIPHY
GIF description: A sleepy looking toddler/preschool aged child is sitting on some sand and making the motion for lying down as the camera zooms out, with text that reads 'I TAKE NAP RIGHT HERE'.

I wound up so sick for about 6 weeks from early July that I didn’t go out anywhere. I made it a Dry July by total accident! But as for going out, even trips to the shops can be devastating. I literally missed having my birthday party.

Missing out on events because you’re just too sick to do anything is not fun at all, and even when you do go out, you’re very limited in what activities you can partake in. My rheumatologist reminded me that I don’t have the stamina to keep up, and this doesn’t just relate to things that are ‘fun’.

I feel that every time I leave my house, eyes are judging me. It's as though I said I was sick, but didn't commit to the whole bedridden thing because I remember the judgmental attitude of internalized ableism ringing in my head - if I could be going out to do shopping, attend appointments, socialize, uni, etc, I could be going out to work. It's not that I don't want to, but the things I have to do in order to survive my day kinda eats up my energy really quickly.

4. People are hard.

via GIPHY
GIF description: Scene from Star Trek TAS, Captain Kirk and Bones are on the bridge with text that reads 'planetary evaluation, Mister Spock', then switches to Spock looking at the Earth on a viewscreen with text that reads 'basically, it's shit'.

But oh my god, the moment people see you having fun, you must be feeling better, right? It’s almost like people take pleasure in busting fakers, because if you have a chronic illness, your life must be lived as dull as possible to prove you’re really disabled.

So many doctors and psychologists will tell you that going out and having fun or having a hobby are good for the soul. It helps with mood, and all the extra happy chemicals in your brain have a positive effect on your health, but it's not something you can spend doing all the time, because energy is limited. While your friends are out several nights in a row, it just feels that you miss out on a lot, and yes, you do, but when you do go out, there are questions left unanswered about what you functionally *can* do.

5. Anytime spent doing an activity, no matter how simple, costs spoons.

via GIPHY
GIF description: Cartoon battery on a blue background walking on screen from left to right while its charge is being drained. It falls over when the charge is empty.

And before anyone asks - no, coffee doesn't help.

Spoons are like a currency of energy. The Spoon Theory, originally brought to our community by fellow Lupie Christine Miserandino, has left us saying we don't have spoons to do the thing, and we bloody well mean it. We call ourselves Spoonies, because we use spoons to describe how we are about to go about our days. Low spoon days are all too common, and little things can disrupt this delicate balance.

I'd really like to say that writing this story has taken a huge mental and emotional toll on me, as does every single blog post I do write. Usually, when talking about happier things, I don't feel the emotional drain, but this has ignited a passion for which I will definitely have a depressive hangover. If you are a Spoonie reading this, you probably are feeling the same too.

Just saying hello to someone is enough to make me feel like death some days. People think that you can get through the day doing little things like going to the bathroom, investing emotions in something, or dealing with bureaucrats aren’t a ‘real activity’, but for some, it’s a huge drain on energy from the moment you wake up. One thing people like to insinuate is that energy is only based on physical activity, and forget that the brain is a hungry bastard of an organ that can also get tired quickly from mental processes. Having ADHD means my brain isn’t processing things efficiently, so I’m going to be very mentally exhausted after doing something that requires a lot of thinking. It’s like El from Stranger Things when she uses her psychic powers and gets nose bleeds. She becomes really weak afterwards. That is how life literally is for some of us, the hangover-like state and mental fatigue can strike at any moment and sometimes leaves you paralyzed. (Yes, it has happened to me on more than one occasion...)

via GIPHY

GIF description: Scene from Stranger Things. Eleven (portrayed by Millie Bobby Brown), a tween girl with short and curly brown hair is concentrating hard and the door in front of her opens by telekinesis.

6. You really need to keep a health app with all your details handy, in case of emergency.


via GIPHY
GIF description: Scene from Doctor Who, the Doctor (Matt Smith) is is putting his hand over his sonic screwdriver with text that reads 'Don't worry, I have an app for that!'

This is more like advice from one Spoonie to another, and I understand that some people don’t want others to know intimate details about their health, but it certainly helps the cause if you’re unconscious and taken to hospital. It’s crucial to have an up to date list of your conditions and medications for this reason, so in the event this happens, the doctor knows not to give you a treatment that may be contraindicated.

7. Contraindication is the story of your life.

via GIPHY
GIF description: Scene from The Simpsons, Bart is in his bed looking up and shrugging his shoulders with text that reads 'I CAN'T HELP YOU!'.

Ever walk into a doctor’s office and realize you can’t be treated for X because the first or second line of treatment used will interfere with the treatment for Y? Story of my damn life. I’ve found this particularly true of having autoimmune disease and a reproductive organ disorder. Now, because of my autoimmune disease, I shouldn’t even be on any hormonal therapy, but it’s required to keep things downstairs from producing androgens that will screw up my body anyway (like making me insulin resistant). Basically anything implanted or giving high doses of estrogen will cause problems; estrogen is linked with lupus activity, and an implant carries a high risk of infection and/or rejection. Now that I’m being investigated for migraines, I found out I shouldn’t be on hormones at all. We don't know yet!!!

8. You feel absolutely useless.

via GIPHY

GIF description: Scene from Daria, Daria is lying on the floor in an office setting holding up sheets of paper above her with text that reads 'No life. No hope. No future.'

The depression bug comes back because of how you're expected to be versus how you actually are. Depression is a common co-morbidity with any kind of chronic illness, and sometimes, it is the primary source of your chronic illness. Mental health always takes a turn down a bad path when physiological systems don't work as they should.

Sometimes, when people actually care about you, you feel it’s disingenuous, and they’re only doing to to be nice, or until they’re sick of you. There are some absolute gems out there who do give more than they take, but you feel your end of the friendship is just mooching off them and you haven’t much to offer them. This is a real feeling, and it's a devastating blow to self-esteem. I wish more people were caring like that, but I also wish I was able to not feel guilty about having those kinds of relationships.

9. You aren’t allowed to have nice things unless you work for them.

via GIPHY

GIF description: Scene from Futurama, Hedonism Bot with a bowl of grapes on his belly, holding a bunch in his by his claw and in his mouth with grape juice spilling out with text that reads 'I APOLOGIZE FOR NOTHING!'

Just shut up, we suffer enough under the stress of our own bodies, we deserve a little hedonism for putting up with it!

10. You’re still trying your best.

via GIPHY

GIF description: Scene from Unbreakable Kimmy Schmidt, Kimmy is in a car with official looking men sitting behind her with text that reads 'I'LL DO WHAT I CAN.'.

Alas, my stamina is low, but my expectations aren’t. Still going strong with feeling shitty and looking pretty.

.

If you got this far and you like what you read, you can help support me by sharing this post far and wide. Disabled creators rarely get paid for our limited energy when bringing content, so please consider buying me a coffee via Ko-Fi!



Follow me on Social Media!
Facebook
Instagram

.

Lara Schilling, aka Rivet Licker, is a beauty editor based in Sydney. She has Lupus, PCOS, ADHD, Depression, and is on the Autism Spectrum.

Image description: Rivet, a woman with short purple hair, sitting in front of a silver backdrop, wearing a black Nine Inch Nails logo top and makeup, looking up into the corner and smiling.

Do you have a chronic illness? Let me know in the comments below!

This post is presented as a personal experience piece.

For more information, please read my Disclosure Policy.