#if i can explain it to people maybe it'll seem a little less daunting or maybe i just get to talk about it. either way it works out for me

[blueskittlesart]

your blog has made me so much more competent with zelda lore

my greatest accomplishments with this blog have been making people play the games and making people Understand the games. i want more crazy people in the world so i dont look as insane

[salt-baby]

i think first, the most important thing i can say: an heds diagnosis doesn't mean that you can't live a happy and fulfilling life, and over time, it gets easier to deal with.

when I was first diagnosed, I think i had a lot of the same worries as you: I was completely distraught by the possibility of living the rest of my life in pain, in grief over the aspects of my life that I'd been forced to let go of, terrified of what this could mean for my long term health, and feeling utterly alone in dealing with it. The people around me didn't seem to understand what I was going through, and I often asked why I was the one who had to get sick.

coping with this was a long and painful process: my partner's woken up many times in the middle of the night to find me researching my prognosis and symptoms and treatments, and i've cried in just about every place possible (several parking lots, on a poor mcdonalds cashier who just asked how my day went, in a bar, in the middle of a campus walkway). Don't be afraid to let yourself grieve the things that have changed and the doors that may have closed. For me, these things are still sensitive spots, but time really does heal all wounds, and it hurts a lot less now than it did when I first found out.

Some of the things that were most important for me as coping skills were to make sure that i kept talking about it to the people i trusted (and if I didn't trust anyone, to journal and to post about it), to find other people like me who were happy and thriving and cool, and to ask the people i loved to research a bit about my condition. my loved ones understanding the basics of what I experience was really instrumental to them being able to support me, and it meant I didn't have to constantly explain things myself. I also went back to therapy, took a break from drs appointments, and was especially gentle with myself (all my favorite treats, yes I do need that silly little trinket, it's okay to skip class today when I'm feeling awful, etc).

For me, it helped to seek out representation. There's a long history of very amazing disabled people, and seeking out compilations of their art or the history of their protests or whatever cool outfits someone can plan around a cane can help give you a real example of what it is to live well and be sick at the same time. Additionally, in many ways, becoming sick meant I didn't feel like myself - the way my body looked, in braces and compression tights, no longer felt familiar. Customizing my aids and making them an expression of myself helped immensely.

I can't emphasize enough that heds doesn't inherently mean you'll spend the rest of your life in pain. I won't lie to you and say that the journey ahead wont be difficult, nor will I lie and say someday you'll be symptom free. But, theres a lot of effective treatments, and I'm in a lot less pain now than I was when I was diagnosed (I can't recommend enough getting a second or a third opinion, and refusing to settle for a shitty doctor). New symptoms pop up, and new symptoms get dealt with, and in the meantime I live a full and colorful life - concerts and late nights studying for exams and roadtrips and love and complaining about work and petting that cute stray cat. From now on, maybe your condition will be a big part of your life, as it is for mine, but you've got the whole rest of it to live and enjoy.

The future is daunting - at one point it made me sick to my stomach to think about. That's okay. start with tomorrow, and survive that, and everyday it'll get a little easier. I really wholeheartedly believe that you're going to be okay.

And if you're not, and you need someone to talk to, I'm here. My dms and askbox are open, and you're always welcome to talk to me and ask questions. The more we stick together, the better off we all are.

If anyone can offer any advice at all I would be grateful enough to lay down my life for you, how do yall with chronic illness get peace? I recently received a hEDS diagnosis and am actively working through stomach issues and just. cannot get it off my mind and it's making work just that much harder on me bc I feel so much more stressed by it all than normal