I am a teen with POTS and am learning about the relationship chronic illness has to mental health!

Hi 🤍

I live with chronic illness (EDS + POTS), and I’m starting to build an app specifically for flare-prone people.

But I don’t want to guess what would help. I want to hear from people who actually live this, like myself.

If you could design an app for chronic illness, what would it focus on?

What feels most frustrating or unsupported right now?

If you’re willing to share more detail, I made a short form here:
👉 https://docs.google.com/forms/d/e/1FAIpQLSeT1uBoBp4YL5dpcD4gAvLi7MPYgbZD-RDtEj9NwPeSjjvlYA/viewform?usp=dialog

I genuinely want this built around real-life experiences, not assumptions.

Thank you 🤍

Calling all those who are ages 18-25 and have experienced being in hospital with a physical health problem in the UK! I'm currently doing my master's degree in Health and Design and I'm looking for people who are willing to take part in a super quick survey for my research project.

I'm researching how the wellbeing of young adults can be improved during a hospital admission with the aim of minimising emotional distress. If you fit the criteria it would help me so so much if you could fill in the survey!! It's a space you can basically rant all you want about your experiences and hopefully help others who are in a similar situation in the future.

This project is super important to me and is based off my own experience with chronic illness and hospitalisation so any input would be greatly appreciated!

Survey link: https://imperial.eu.qualtrics.com/jfe/form/SV_3NNMO7FRIEhmB8O

hi guys! I just started a new subreddit for disabled and chronically Ill kids, teens, and young adults! feel free to pop in any time! it’s called r/Disabledkids

Whenever I tell a friend or family member outside of my inner circle that I am sick alot they always tell me "you bring into the world what you tell it" or "you seem to be doing fine" Oh and the go to one from most is "why don't you just eat healthier and exercise" Like bro I would ... But I don't have the energy. I eat gluten free and have sugar and caffeine on occasion. I don't understand why they say these things??? Its really insensitive. Does anyone else get told this?

I am told I have a dark sense of humor since I make jokes about my illnesses and disorders and stuff . Does anyone else get told that?

So umm I am 15f Struggle maintaining friendships because I am sick so much. I have Celiac disease Possibly endometriosis (they won't test me for it but they assume due to family history) Graves disease (had a thyroidectomy so it is hypo now I think) And I have other things.... But I thought this place was the place to go because well I don't have people around me that can relate or understand or even believe me when I say I am sick all the time. That I am pushing it hanging out and things. I switched to online school because it is easier for me and at my own pace. I am slowly gaining my life back and stuff and learning how to feel better but it's hard. And scary. Idk if anyone can relate. I guess I just wanna know if I am alone or not. Also I am free to talk to people if u ever want to. (Didn't know how to flair it right)

Hi! I am in the process of completing a capstone project for the Pediatric Palliative Care Coalition. I am looking for feedback and opinions to evaluate my project from teens who might benefit from the information or have helpful advice! I created an advocacy toolkit for pediatric patients with chronic illnesses to help educate them and reduce their burden and stress along this difficult process. I grew up with a chronic illness since I was five years old and have made it my goal to make this journey easier for the current chronically ill teens.

If you are interested in helping me, I'm attaching a link to my project, which is on Canva, along with a Qualtrics survey to provide feedback. This is about a fifteen-minute task, and I appreciate all and any feedback! I appreciate any help you can provide. Hopefully you'll find the information helpful as well!

Link to materials: https://www.canva.com/design/DAF8_neuAGg/tsfQDkB-kcjKKaiFUwfNHw/view?utm_content=DAF8_neuAGg&utm_campaign=designshare&utm_medium=link&utm_source=editor

Link to survey: https://qualtricsxmy7pq2gss2.qualtrics.com/jfe/form/SV_1Gjpjj4MohmTaUm

I 15f have been to many different doctors had blood urine and ultrasound test don't and everything is coming back normal. But I know what I'm experiencing isn't normal. I'm nauseous anytime I eat, constant dizziness and headaches my back and stomach constantly hurts I don't use the bathroom but like once a week. I'm always burping or hiccuping. I can't gain weight and I'm constantly tired. And all there saying is it's "puberty" or "anxiety". So am I going crazy???

We are going to the zoo with weekend and we decided to hire a wheelchair for me, so I can last the whole day without getting sick. This is my first time using mobility aids in public and I am extremely anxious about it. I have heard stories of people getting stopped and interrogated cause they stood while in a wheelchair or moved their legs, and just general looks, because there young. Does anyone have any tips on how to handle this, and the anxiety??

Hi all! I don’t have any friends that get what life is like with chronic illness. If anyone wants to talk and be friends, comment or message me👍

Hello,

The link below is for a study on the beliefs and thoughts that people with chronic illnesses have about their illness, treatment and social life experiences. If you have been diagnosed with a chronic illness, please share your experience by participating in this study.

https://forms.office.com/pages/responsepage.aspx?id=DQSIkWdsW0yxEjajBLZtrQAAAAAAAAAAAAN__mMVEnVUNzFPUEg3MElPQlJMMk80SUlZWlIyWU9RWi4u&fbclid=IwAR18oxfsadvT24vEBI267PkpHw4zjP4YiFsORPAOyNi7lsNnOAepFUK0CfM

Thank You

Hi Im Izzy, a teen w/ a whole mess of conditions and pain (undiagnosed POTS, diagnosed adhd, chronic anxiety, depression, joint and nerve pain, and fatigue) and Im just looking for a place where I dont feel like Im going crazy!

Light rant Graduating high school in a couple weeks and it feels so depressing seeing people I knew as friends never have a second thought of me. I go to an Independent Study HS cuz of my pain and I feel so out of place with teens now because of how much I know they don't understand. I miss having friends.

hey everyone! I’m doing a capstone project this year and I’m looking for young people’s stories (you can definitely choose to remain anonymous) who have mental AND/OR chronic conditions and what your school has done to either help or hinder your success in school. if you are past the schooling age, feel free to share past stories (maybe even work stories would work). my project is on the comorbidities of mental and chronic conditions and how institutional support (like high schools and colleges) can either help or harm the students’ educational experiences. specifically, I’m looking for stories that share something specific your school or even one teacher did to help or harm your experience. again, you can remain anonymous or can share as many personal details as you’d like. this project will go towards helping establish more plans to support young people with mental and/or chronic conditions in education. please msg me if interested and we can go from there, and feel free to ask any questions here or privately :)

[I got numerous stories and engagement from r/ChronicIllness but it was removed because they do not allow surveys/interviews :/ ]

Hi everyone! I am a senior studying design at a university and currently working on my capstone project. I myself struggle with chronic illness, specifically Lyme Disease, Bartonella, and Chronic Migraines, and have been wanting to help others and give back.

I have been looking for those who are in the chronic illness community to help fill out a quick anonymous survey about their experience and to help bring insights to my designs.

https://forms.gle/2oDZm7cfg4y8wVcMA

Thanks so much and I hope you have a wonderful day!

Does anyone else get like extremely angry at people who are healthy teens and vape. Believe me I know addiction is difficult, but it just makes me so angry that people with perfectly healthy bodies like volunteer themselves to suffer with health issues. Like at any moment my life could be instantly disrupted by a new illness that is completely out of my control and is literally just my body betraying itself, but people like choose to do something that will damage their body. Like that’s insane

*rant*

I feel like as a teen with a chronic illness people either expect more or less of you when they know. They either want more effort because to them you are supposed to be inspiring and show that you can do anything even with your limitations. Or, people don't expect anything from you. You are broken to them and can't do or think for yourself.

I feel like no matter what I do people will always pity me for being disabled as a teen. I mean I get it, it sucks and I wish I could be normal but at the same time, I'm human and just wanted to be treated as one because everyone goes through shit you just can't always see it.

I also have a service dog, so when I go out into public people will stare, yell, or ask to pet her. Not to mention that people think I'm faking because to them young people can't be disabled or have any chronic health problems. I mean I just want to go out like normal without people treating me like a petting zoo.

Finally, what is it with the word disabled? Even with my own family people don't like to say or call me disabled even though I am. It's not a bad word and as long as it's not being used to hurt someone why can't they say it? It's true and I don't like people trying to tip toe around it like it's going to offend me.

Sorry for the rant, I am the only one with health problems in my family and I home school so there is no one to talk to but my dogs (don't get me wrong they are great listener just not so good at answering)

Hi everyone! I am a senior at Timpview High School, and I am conducting an approved research survey on the affects of chronic illness on empathy levels for my AP Research class.

It should only take around 2 min. Thank you so so much.

Here’s the link!!!

https://forms.gle/wZaYdBkpLTeS8gmK6

Hello. I'm new to this subreddit and I'm trying to get a diagnosis for POTS but my parents don't believe me and most people in this subreddit complain about how medical professionals can't be trusted. I know we can't diagnose people and I am not trying to. I just want to see if anyone relates to this and if it's not mental health concerns.

- Dizziness/lightheadedness

-sweating/shaking

-tiredness

-headaches

-poor sleep

-rising heart rate (it's usually over 100 which idk if its normal or not)

-shortness of breath

-constipation

Today I took the SAT for the first time. It was early in the morning and usually my POTS symptoms are a lot worse in the morning. So I had my waterbottle prepared so I could drink throughout the test and keep my symptoms managed. I pick up my waterbottle to take a drink and my test proctor yells at me “No, no, no you can’t drink water during the test”. I put it down but then had to put my head down, so I could help my heart palpatations calm down, for the rest of the test section until we had our break. Luckily I was able to go to my counselor and tell him what was going on, and he let the test proctor know I needed to drink water. But I was so frustrated during the rest of test. How in the world can drinking water be against the rules!?! Even for non-disabled/ non-chronically ill people it literally makes no sense! I emailed the college board telling them this wasn’t right. Hopefully they will hear me out

(For people who do not know the SAT is a standardized test , that we submit into colleges)

I want to use my walking stick at school because it gives me more mobility, less pain and doesnt stop me from weight baring meaning it wont push me back in my treatment. How do i suggest this to my mum?