#chronic disease

[tumble-tv]

As of today, I am completely unable to play my ukulele.

The instrument I have played and adored since second grade, that made me love music on a whole other level, that has so many wonderful memories attached to it, is now useless to me.

The blue ukulele my mother got me when I started playing, the one with the dolphin as the bridge, will now collect dust on my wall like every other hobby I have lost.

I have no hope of ever playing again. The damage in my hands is too significant for anything to ever help.

I just want to play for my friends one more time, sit on dewy grass at camp around the fire, strum chords as we scream the lyrics.

I won't be able to this summer.

[i-say-stupid-things]

what is it with able bodied people saying “get well soon” after you say that you’re chronically ill?? like? i am not gonna? and i once literally responded with “i’m not gonna, it’s chronic, as in permanent.” and they went like “oh well, hope you get better!” like bro 💀

[rhiandoesfandom]

The mind numbing anger of chronic fatigue is getting irritable because you're so fucking tired but you really feel like you SHOULDNT BE.

You SHOULD be able to sit at a desk and do work. You SHOULD be able to just watch a freaking YouTube video. You SHOULD be able to just eat fucking lunch.

But you can't. Because your eyes are closing and it's like temporary death is taking you.

[spoonie-on-wheels86]

[cakesexuality]

I've been disabled for almost 29 years. Here's what I've learned.

Tablets sink and capsules float. Separate out your tablets and capsules when you go to take them. Tip your head down when taking capsules and up when taking tablets. Liquigels don't matter, they kinda stay in the middle of whatever liquid is in your mouth.

If your pill tastes bad, coat it with a bit of butter or margarine. I learned this from my mom, who learned it from a pharmacist.

Being in pain every day isn't normal. Average people experience pain during exceptional moments, like when they stub their toe or jam their finger in a door, not when they sit cross-legged.

Make a medical binder. Make multiple medical binders. I have a small one that comes with me to appointments and two big ones that stay at home, one with old stuff and one with more recent stuff.

Find your icons. Some of mine include Daya Betty (drag queen with diabetes), Stef Sanjati (influencer with Waardenburg syndrome and ADHD), and Hank Green (guy with ulcerative colitis who... does a bunch of stuff). They don't have to be disabled in the same way as you. They don't even have to be real people. Put their pictures up somewhere if you want; I've been meaning to decorate my medical binders with pictures of my icons.

Take a bin, box, bag, basket, whatever and fill it with items to cope with. This can be stuff for mentally coping like colouring books or play clay or stuff for physically coping like pain medicine or physio tape.

Decorate your shit! My cane for at home has a plushie backpack clip hanging from the end of the handle and my cane for going places is covered in stickers. All of my medical binders have fun scrapbooking paper on the outside. Sometimes, I put stickers and washi tape on my inhalers and pill bottles. I used my Cricut to decorate my coping bin with quotes from my icons, like "I've seen enough of Ba Sing Se" and "I need you to be angrier with that bell".

If a flare-up is making you unable to eat or keep food down, consider going to the ER. A pharmacist once told me that since my eye flares can make me so nauseous that I cannot eat, then I need to go to the hospital when that happens.

Cola works wonders for nausea. I have mini cans of Diet Pepsi in my coping bin.

Shortbread is one of the only things I can eat when nauseous. Giant Tiger sells individually-wrapped servings of shortbread around Christmas or the British import store sells them year-round. I also keep these in my coping bin.

Unless it violates a pain contract or something, don't be afraid to go behind your doctor's back to get something they are refusing you. I got my cardiologist referral by getting in with a different NP at my primary care clinic than who I usually saw. I switched from Seroquel to Abilify by visiting a walk-in.

If you have a condition affecting your abdomen in some way (GI issues, reproductive problems, y'know) then invest in track pants that are too big. I bought some for my laparoscopy over a year ago and they've been handy for pelvic pain days, too. I've also heard loose pants are good for after colonoscopies.

Do whatever works, even if it's weird. I've sat on the floor of the Eaton Centre to take my pills. I've shoved heating pads down my front waistband to reach my uterus.

High-top Converse are good for weak ankles. I almost exclusively wear them.

You can reuse your pill bottles for stuff. I use my jumbo ones to store makeup sponges and my long skinny ones to hold a travel-size amount of Q-Tips.

Just because your diagnostics come back with nothing, it doesn't mean nothing is wrong. Maybe you were checking the wrong thing, or the diagnostic tool wasn't sensitive enough. I have bradycardia episodes even though multiple cardiac tests caught nothing. I probably have endometriosis even though my gynecologist didn't see anything.

You can bring your comfort item to appointments, and it's generally a green flag when someone talks to you about it. I brought a Squishmallow turkey (named Ulana) to my laparoscopy and they had her wearing my mask when I woke up. I brought a Build-A-Bear cat (named Blinx) to another procedure and a nurse told me that everyone in the hall on the way to the procedure room saw him and were talking about how cute he was. Both of those ended up being positive experiences and every person who talked to me about my plushies was nice to me. If you don't feel comfortable having it visible to your provider during the appointment, you can hide it in your bag and just know it's there, or if you're in a video appointment, you can hold it below frame in your lap.

Get a small bucket, fill it with stuff, and stick it in your bed (if you have room for it). I filled a bucket with Ensure, juice boxes, oatmeal bars, lotion, my rescue inhaler, etc. in October 2023 in anticipation of my laparoscopy and I still have it in my bed as of January 2025.

If your disability impacts your impulse control (e.g. ADHD, bipolar disorder), you should consider setting limits around your spending -- no more than X dollars at a time, nothing online unless it's absolutely necessary, and so on. Or, run these purchases by someone you trust before committing to them; I use my BFF groupchat to help talk sense into myself when I buy stuff.

Feel free to add on what you've learned about disability!

[houstonxbreed]

I’m getting a girlfriend in 2025. I’m claiming it NOW 🙏🏾😌

[chronicallyillandcoping]

Anyone else find it difficult to remember that abled bodied loved ones are gonna worry when we talk about new/concerning symptoms? Like in my mind its just another day,just a bit more pain, just a flare etc. but for them its different and sometimes i find it hard to be mindful of that.

[incognitopolls]

We ask your questions anonymously so you don’t have to! Submissions are open on the 1st and 15th of the month.

[nightinghoul]

If you have a chronic illness, you may never get well:

A bulleted list, because I cannot process big blocks of words.

You may manage it better or worse than other people with the same chronic illness.

You may have days where you feel Iike giving up.

You may have days where you are at peace with your illness.

You might feel awkward when people tell you to "get well" or ask if you're "feeling better yet".

You might feel hurt when people tell you to just be more positive.

You might want it to just be okay to feel sad, angry, frustrated, or tired, and it is.

You might feel guilty sometimes, because you feel like a burden, or like you're letting everyone down.

You might not be able to work.

You might feel like a faker, because of what you CAN do.

You might need a mobility aid or medical device.

You might have no visible signs of illness or disability.

You might need different accommodations than other people.

You might feel hurt because people say, "I wish I had it so easy."

You may feel like you really need to talk about it, but people don't want to listen.

You may have a hard time convincing doctors to help you

You may need a lot of help and rely on another person or people.

You may have no one to rely on.

You may feel like you are all alone with this experience.

You are not alone.

You are not a faker.

You are not less than.

You don't owe the world your soul.

[serana666]

Getting on my soapbox about something I think is REALLY important for chronically ill ppl to think about.

Being undiagnosed and disabled is a terrible experience. You’re screaming into the medical void for ANYONE to please SEE YOU and help. You start thinking “is it just me? Could it just be in my head? What’s wrong with ME?”

And I’m here to tell you, it’s 👏🏻NOT YOU👏🏻 it’s THEM. (The doctors)

I have been through the grueling process of becoming totally disabled by chronic illness, without knowing what it could be. I picked up diagnosis’ along the way: RA, then lupus, then fibro. And I am LUCKY that my blood worked with me to show those things, not everyone is so lucky.

I kept thinking (foolishly buying into the narrative doctors try and sell you) that if I could just get a *serious* diagnosis I would finally be given access to the care I needed, that ALL disabled people need. That was never the case at any step in the process.

When I was diagnosed with RA and began having symptoms outside of it, that were completely debilitating my rheumatologist told me I just needed more exercise and activity. I told them specifically I had fatigue so strong that I was loosing the ability for basic functioning.

When I found a new rheumatologist and was diagnosed with lupus I thought my troubles were over. Then she started saying weird shit like “do you have a boyfriend? You’re so pretty!”

She found out I was a lesbian when I brought my girlfriend to my appointment to be my advocate. Her whole demeanor changed to me and I spent 6-8 months with her receiving no treatment. They kept saying “oh it’s the insurance” nope they sent me letters telling me this office was not following up.

So I moved to a blue state literally out of fear that I would die waiting on these bigoted doctors. I got a rhum in a blue state. I was diagnosed with secondary fibro. Again, I foolishly believed I would finally be in the clear. No, she still minimizes and blinks at me when I describe my pain.

Doctors are not our allies, even though they should be above all else. They find ANY excuse to minimize us. So if you are someone who is undiagnosed or with a diagnosis that is misunderstood/not taken seriously , they will milk that for all it’s worth. 👏🏻ITS NOT YOU👏🏻

I’ve seen people in disabled communities minimized for their race, their weight, their gender, their sexuality/queerness, their age, their diagnosis or the lack thereof, ITS NOT YOU!

You know your body, and the pain you feel BETTER than any doctor that has been trained to systemically ignore you!

Don’t let them tell you what your reality is. It’s such a knee jerk reaction for minorities to do this to themselves.

You deserve medical care that isn’t contingent on your doctors bias’. We NEED more empathy. Don’t let their disregard for your life leak into the love you NEED to give yourself. 💕

[hellyeahsickaf]

Low Spoons and Hygiene

Sometimes being disabled means struggling with hygiene and that can be embarrassing, even though it's not your fault or a reflection of you as a person. Nobody wants to be stinky or feel dirty, especially when a lot of illnesses and disabilities can entail symptoms like excessive sweating that can make the issue of struggling with hygiene a million times worse.

But smelling bad is the least of your worries, as poor hygiene can lead to things like skin infections. Bacteria and fungi like hanging around in stagnant, often damp areas that collect sweat. And most people have folds- even if just a little, which can be the ideal habitat for dangerous microorganisms. Not changing your underwear/bra or washing your body for an extended period can lead to things like jock itch, intertrigo, yeast infections, athlete's foot, UTIs (anyone can get one and they can spread to the kidneys within days or even hours- and you need those little guys!), all sorts of complications. The existence of foul or sometimes even a slightly "sweet" odor on your body or even in your urine tends to indicate the existence of bacteria (it's why armpits stink) or fungi like candida. Dental hygiene is equally important- an infected tooth or excessive cavities can be bad news. If you experience these things or struggle to regularly care for your body, it's not something to be ashamed of. All of those complications can and do happen to people who do everything right.

Note that issues like UTIs or dental infections don't tend to just go away on their own and need to be treated as urgently as possible.

However, I'll share some things that may prevent or remedy issues like infections and odor that's gotten out of hand and hopefully some may find this list helpful in some way. Any products I've listed may be found at other retailers or at different prices, they're just examples. Feel free to add on to it.

The bare minimum is always better than nothing. Brushing with just a dry toothbrush, using disposable body wipes or a washcloth/sponge instead of a shower, dry shampoo (the sprays are actually pretty bad for you, I'd stay away from those if possible), leave in conditioner, also whole body deodorant is a thing. If the most you can do is change your clothes- hell even just change your bra and/or underwear, it can be the one thing between you and an awful infection.

If infections are a concern, like if say you suffer from chronic UTIs or yeast infections it's advisable to wear breathable cotton underwear.

If you can't get up to brush your teeth or struggle to do so, it may be helpful to purchase disposable toothbrushes. These ones have floss picks attached.

Flossing is just as, if not more important than brushing. If you only have the energy to floss on some days, do that. If you need to keep floss picks and a place to dispose of them near your bed, then that's fine (just don't let it pile on without disposing of it and create a biohazard). it can help remove food particles that help create a breeding ground for bacteria. Also gently moving in and out between your teeth with slight movement if needed is ideal, don't roughly saw across your gums, ouch.

If you struggle with wiping say due to mobility issues, there are products for this. Wiping back to front as an alternative risks yeast infections and UTIs. It's a very common cause of these diseases due to bacteria like e-coli. We do not want that.

Crashing and can't wash your sheets? Out of shirts with no energy to do the laundry today? Antimicrobial fabric spray may help with the odor and bacteria that accumulates on fabric as a temporary fix until you can properly wash it. Try not to wear clothing or interact with fabrics like blankets and couches that are still wet from the spray, as that can irritate the skin.

Try to avoid "feminine wash" products if possible, you don't need the fancy Summer's Eve premium strawberry hibiscus blush scented whatever, it can fuck up your PH and kill good bacteria despite claims to do otherwise. Same with PH wipes. It's recommended not to use soap on your genitalia, especially scented and especially if you have a vagina. If you must use some sort of soap, dermatologists typically recommend the most basic, unscented wash. And do not put it in your body by any means.

Rinse free shower sponges have been a life saver for me, especially the ones that also work as shampoo (it's probably not color safe tho). You just add water, lather, and make sure you dry off well. If it helps you determine how much to buy, I normally find myself using maybe 3-5 sponges each time.

OTC jock itch cream can work for some fungal infections on the body not limited to jock itch but if you see no difference or worsening within a few days of using it, consult a dermatologist as you may need something different or stronger.

Unscented pads and tampons are best and should be changed every 4 hours or so ideally. Never leave a tampon in for over 8 hours. Despite common fears, 9 hours won't give you toxic shock syndrome, that normally takes a few days and is quite rare with tampons but that doesn't mean that 13 hours or something is good or safe. I've just heard some say that sex ed scared them away from tampons after being told stories of TSS. I hear that menstrual cups are also a great alternative that many don't consider.

Monistat and similar yeast infection products often come with different options like 3 day treatment, 5 day treatment, 7 day. I know you want to feel better ASAP, but just take into account that 3 day will be highly concentrated and can cause more burning than the 7 day. Longer treatment may also be more effective in some cases. Penile yeast infections exist as well. Just be aware that some products are more potent than others regardless of birth sex. Antifungals in general may cause itching and/or burning, which some are more sensitive to than others or may even find triggering in cases where it must be applied to the genitalia.

Hydrocortisone cream is your best friend if you're experiencing itchiness due to things like skin infections, contact dermatitis, yeast infections, etc. But please don't use it to mask the symptoms of an infection without treating it.

How frequently you need to wash your hair varies by hair type. This can vary between every 2 days for some and every 1-2 weeks for coily and textured hair. Make sure you look into what is ideal for your hair type. And again on days where you cannot wash, disposable sponges and dry shampoo can be a life saver.

If something is discolored, odorous, itchy, inflamed, bumpy, producing moisture, warm to the touch, oozy, weepy, splotchy, sticky, burning/painful, it may likely be an infection or in some cases an allergic reaction. Familiarize yourself with what different skin infections and diseases may look like on your skin tone. Ringworm and other fungal infections for instance may appear red or pink on fair or lighter brown skin, but on darker skin may appear gray or darker brown.

Fungal infections are also super fucking contagious. To other parts of your body, other people, even to pets. Wash your hands well with antibacterial soap, especially before and after applying any topical treatment or touching the area in any way. After a shower, PAT the infected area dry and do not reuse that towel or use on other parts of the body.

Invest in a shower chair if you feel it may help you, it's one of the best things I've ever bought. I didn't want to get one at first because it felt like I was "giving in" to my disability more and more but that's the internalized ableism talking. Get the shower chair.

A bar to help you stand from the toilet/tub/shower chair may also be helpful.

Again, feel free to add to the list if you want!

[tumble-tv]

"kill them with kindness" WRONG run them over in your wheelchair 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽

[i-say-stupid-things]

psa: you actually are worth it. you are worth the trouble. you are not too much to put up with. your disability doesn’t make you unlovable. you’re not too much of a burden to “put up with”.

you are amazing and lovely and the right person will come and see just how wonderful of a person you are. your disability changes nothing about that

[rhiandoesfandom]

Reminder to myself: it takes a lot of fucking energy to be in pain

[spoonie-on-wheels86]

This is your "oh shit it's getting hot again" reminder that SSRIs / antidepressants cause sun sensitivity and make you more prone to dehydration. Stay hydrated babes.

[cakesexuality]

My personal record is 9, the person who drew it kept calling me "a rockstar" for having that much at once

Please reblog for sample size