rb this post and add all your favorite coping mechanisms and mantras for being chronically ill, I'm not necessarily talking about symptoms, more so the mental health side of it
I wanna get something together as a resource for newly diagnosed people that have to be going through this, or just for anyone in general :)
community support and shared information makes it less scary.
my favorite coping mechanisms and reminders:
keep a journal with all of your diagnosis information, appointment information, and symptom information if you have a complex medical history. questions for appointments, outcomes of appointments, important topics in discussions, etc.
write down all of your favorite coping skills and reminders, including some of these, and read them frequently
when my dark circles are really bad I put a little bit of red eyeshadow above and below my eyes and then put on eyeliner and mascara and I look like a little vampire
dinosaur socks/silly socks when you're not feeling well (my friends actually use this as an indicator for my good and bad days now)
coloring in coloring books or drawing with friends in person/over facetime
video games, especially if you have online spoonie friends that live far away, or if u are both too tired to leave the house
I also personally really like story and lore-based single player video games for when I am alone
going swimming at the pool or the beach
making an anonymous lowkey vent blog and screaming all your worst thoughts into the void whenever u need to (or just do it in your notes app idk)
getting a therapist that u feel understands u
posting in a community, like this, where you can meet other people and talk about your experiences and share advice and tips you have learned, or joining an in-person club or support group
filling your space with pretty decorations and lights on your good days so that on your bad days you can recover in a nice cozy place with pretty lights and things to look at
stuffed animals to snuggle
decorating mobility aids with tape, ribbons, stickers, paint, fake flowers, spikes, etc. to fit your personality
crying and not feeling bad about it because this is a grieving process and that is normal
stop being a perfectionist and be mindful of your energy levels I am so serious, look into pacing and the spoon theory/similar theories
remember that there are sooooo many alternative ways of doing things and there really are no rules, you can sit down on the ground outside if you can't find a place to sit. you can sit in a chair in the kitchen and wash your dishes and chop vegetables. you can get online grocery pickup or delivery if you don't have the energy to walk around a store, or find someone to do that for you. you can eat all the ingredients of a sandwich without making a sandwich. u can get hygiene wipes from the drugstore or use a warm washcloth in the sink if you struggle with bathing. washing your mouth with mouthwash is better than not brushing at all. you can get a wheelchair if you have trouble standing for long periods, just because it would make life a bit easier. the possibilities are endless
finding irl friends that are also chronically ill or disabled. one of my best friends is a T1D with POTS and MCAS, and my other best friend also has POTS. I absolutely love them and adore them and they frequently remind me that we have shared experiences and that I'm not alone. if u don't know anyone and u have a hard time making irl friends, you could try the "make friends" feature that a lot of dating apps have. I have personally made 4 friends that way.
surround yourself with loving, supportive, and patient friends, not people that will exclude you and act impatient just because you get sick a lot. those aren't your friends. usually this will be subtle, like passive aggressive or just weird comments or nonverbal cues. I promise it will make so much of a difference. my friends know that I sleep a lot, I sometimes don't respond, I get sick easily, I sometimes have to cancel last minute, and they know that if I seem tired or uninterested it's because I don't feel good. they know that I still try my best and that I love them regardless
if you're dating, remember to keep your standards higher than you think you should. I'm AFAB so this may not apply to everyone, but I personally think like bulldog advocate energy when you have to be in the delivery room during labor. that energy during appointments, that energy when you run into judgmental or unsupportive people. someone who will take the time to show up for you, understand your needs, and love you regardless of an illness.
focus on your quality of life over everything else!!!!!!
if your mental health is ever really really bad just remember u were too powerful and god had to nerf u and now it is your duty to keep living out of spite good luck soldier
