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!
Few more to add:
Don't be afraid to ask for a second opinion. It can take a while, especially with NHS waiting lists, but if you haven't been listened to by the first doctor then it's always worth trying again
Do your research on the medications you're prescribed!! Be aware of how the medication is making you feel. Ask for an alternative if you're not comfortable with the medication they've offered
If you've got people in your life you can talk to, lean on them. Chronic illness is lonely as fuck and, as someone who didn't have anyone to talk to about what I was going through for years, even just mentioning it casually in conversation helps
If you don't have anyone in your life to talk to, try online support groups or even just follow people with similar experiences to you online if you don't feel comfortable sharing what you're going through
In some counties, the NHS offers free talking therapy, including a targeted pain and fatigue group. It might not be for everyone, but it could be worth checking out if you need extra support
Electrolytes are super helpful if you're low on energy and or find it difficult to stay hydrated. And you can get them in lots of different flavours!
Hot water bottles and TENS machines are god tier
I feel like it should go without saying, but people are disabled before they're diagnosed. If you don't have a diagnosis, you're still valid and your experiences matter. Getting a diagnosis can be ridiculously difficult. I had to wait for four years before I could even access the medical system because I didn't have my parents' support so I had to wait until I was 16. It then took another five years before I was diagnosed. It was during that time that I needed support the most, and didn't get it
KT tape can be really useful for stabilising joints (but be careful when taking it off if your skin tears easily). If you use KT tape, remember to round off the corners so it's less likely to peel off
Dealing with body image can be really difficult sometimes. Disability changes how your body feels and looks and it's difficult to come to terms with that. I haven't quite figured this one out myself yet (past get tattoos and take slightly nsft photos), but I'll let you know when I get there. I think it helps to try and reclaim your bodily autonomy so anything that gets you there I guess
If you make your own food, try batch cooking one pot dinners (chilli, stew, daal etc) so you only have to cook once a week and don't have much washing up to do
There's nothing wrong with sitting down to do something if it helps. Sit down to wash up. Sit down to shower. Sit down at a concert. Just sit down
Don't have the energy to shower? That's okay, you can use baby wipes for your body and a Freshwipes no rinse shower cap for your hair x
