Skip to main content Skip to bottom nav
Community /

Disability Support Forum

Create a New Thread
Gif Photo Link
MistyMagic profile picture
Self-Advocacy
by MistyMagic
Last post
3 days ago
...See more Advocating for oneself in health issues can be very important for ensuring you receive the best possible care, but first:-  What is ‘advocating’? It's being able to speak up for yourself rather than relying on others – having the confidence to say or do something when you don't think something is right, or when something needs reviewing, or changing. Sometimes this is called self-advocacy and when it comes to our health that can really be important! Have a goal!  What do you want to achieve? This could be something as simple as ‘understanding what is said to you’, or to ‘get a referral to a specialist’. Or, more complicated such as ‘a change to medication’ or ‘get an explanation on a report’. Be realistic in your choice. It helps to decide your goal or target before you tackle self-advocating. Sometimes it is better or easier to have a close friend, carer, or relative advocate for us, we may be ill or too weak or disabled to be able to self-advocate in which case perhaps suggest they read this post or share the information with them to help both of you advocate successfully. Being disabled or ill with a condition can mean we feel very vulnerable and unable to support ourselves effectively in what can seem to be a very stressful situation like a doctor appointment. That is when preparation can be key to feeling like we have achieved the best. Sometimes we may lack the confidence we need to make the best decisions and that is when learning as much as we can about our disability, condition, or mental health issues really can reap benefits. Here are some strategies to help you effectively advocate for yourself: 1. Educate Yourself * Understand Your Condition: Research your health condition thoroughly. Use reputable sources such as medical journals, trusted health websites (like Mayo Clinic or WebMD), and patient advocacy groups. * Know Your Medications: Learn about the medications you're prescribed, including side effects, interactions, and the reason for taking them. 2. Communicate Clearly * Be Honest and Open: Clearly describe your symptoms, concerns, and how you're feeling. Don't downplay or exaggerate your condition. * Ask Questions: If you don't understand something, ask your healthcare provider to explain it in simpler terms. Questions like "Can you explain that again?" or "What does that mean?" can be very helpful. 3. Be Organized * Keep Records: Maintain a detailed health journal with your symptoms, medications, and any changes in your condition. Bring this journal to your appointments. * Prepare for Appointments: Make a list of questions and concerns before each visit. Prioritize the most important issues to ensure they get addressed. * Take Notes: During the appointment ask if you can take notes so that you remember clearly what is said, or ask a friend or family member to come with you to do this so you can concentrate on what is said and carefully choose a reply. 4. Build a Support Network * Bring an Advocate: Consider bringing a trusted friend or family member to appointments to help you remember information and provide emotional support. * Join Support Groups: Connect with others who have the same condition. They can provide valuable insights and support. 5. Know Your Rights * Patient Rights: Familiarize yourself with your rights as a patient. This includes the right to informed consent, the right to access your medical records, and the right to a second opinion. (not applicable to all countries so please check yours!) * Insurance and Coverage: Understand your health insurance policy, what it covers, and your rights regarding appeals and grievances. If you are in a country that does not routinely need health insurance then look at the applicable information such as ‘PALS’ in the UK,  * Research your Doctor: hospital, or clinic. Know what they can and can’t do for you. Look at their website and read all the information there to familiarize yourself with their stance. 6. Be Assertive, Not Aggressive * Advocate Assertively: Assert your needs respectfully. Use “I” statements like “I need more information about...” or “I’m concerned about...” to communicate without seeming confrontational. * Be Polite: use please and thank-you when needed. * Set Boundaries: If a healthcare provider is dismissive or not listening, it’s okay to seek a second opinion or switch providers. 7. Utilize Resources * Patient Advocates: Many hospitals have patient advocates who can help you navigate the healthcare system. * Online Resources: Use online tools and resources for additional support, such as telemedicine services or patient advocacy organizations. 8. Follow Up * Clarify Instructions: Before leaving an appointment, make sure you understand the next steps, including any follow-up appointments, tests, or treatments. * Monitor Progress: Keep track of your progress and any changes in your condition, and report these to your healthcare provider. Use that journal to keep notes of pain or mobility and your condition. 9. Self-Care and Mental Health * Take Care of Yourself: Maintain a healthy lifestyle, manage stress, and seek mental health support if needed. * Mindfulness and Relaxation: Techniques such as mindfulness, meditation, and relaxation exercises can help manage anxiety related to health issues. Conclusion Advocating for yourself in health matters involves being informed, organized, and assertive while maintaining respectful communication with healthcare providers. By taking these steps, you can play an active role in your healthcare and improve your overall well-being. But. . it isn’t always easy, in fact it can be quite challenging at first. It also takes a strong will to advocate and when we are facing a health problem that can be the last thing that we want to face.  Thoughts For You: ✅ Please share with us your experiences of self-advocacy. ❔Have you tried it, how did it work out? 💡  What tips can you share to help others have a better experience, please share them here. 💭 Might you try this approach in the future?
AffyAvo profile picture
Listeners with a Disability - Supporting those with Disabilities (2024-2025)
by AffyAvo
Last post
Sunday
...See more We had one of these before, but many of the listeners are no longer using 7cups. So here's an updated one. Are you a listener with a disability willing to support others with a disability? Please share here! Also note what your disability is or give as much detail as you're comfortable wtih so that members can find someone with similar issues.
MistyMagic profile picture
Braille! - January is World Braille Month!
by MistyMagic
Last post
January 13th
...See more January is World Braille month Louis Braille was born on January 4, 1809 and this year we celebrate his 206th birthday!   Born in Coupvray, France, Louis became blind at the age of 3 while playing with tools in his father’s shop.  When he was 10, he was sent to the school for the blind in Paris, but there were very few books available at that time for people who were blind.  Inspired by a system of tactile writing created by French army captain Charles Barbier, Louis Braille spent two years trying to simplify and perfect the code.  When he was 15, the new code was ready, and was easier to learn and quicker to read. It took many years before the Braille code was adopted widely.  The first book in braille was published in 1827 and in 1878, the World Congress for the Blind voted to make Braille the system of reading and writing for people worldwide who are blind.  There ensued a War of the Dots and it was not until 1932 that Standard English Braille was established for all English-speaking countries. Braille is a tactile writing system used by individuals who are visually impaired or blind. The system enables users to read and write through touch, empowering them to access information independently. Structure of Braille Braille is based on a matrix of six raised dots arranged in a rectangular block called a "cell," with two columns and three rows. Each cell represents a character, letter, number, or punctuation mark. The dots are numbered 1 through 6: 1  4 2  5 3  6 By raising specific combinations of these dots, different characters can be formed. For example: * The letter "A" is represented by a single raised dot in position 1. * The letter "B" uses dots 1 and 2. * Numbers, capital letters, and special characters are indicated by specific prefixes. Types of Braille * Grade 1 Braille: A basic system where each Braille cell corresponds to a single letter, number, or punctuation mark. It is typically used by beginners. * Grade 2 Braille: Includes contractions and abbreviations for common words or letter groups, making reading and writing faster and more efficient. * Grade 3 Braille: An advanced system used for shorthand, often in personal notes or informal writing. Applications of Braille Braille is used in various formats and devices to enhance accessibility: * Books and Documents: Printed Braille materials are essential for education and leisure. * Labels and Signage: Many elevators, ATMs, and public spaces include Braille signage to  * provide information. * Digital Braille Devices: Refreshable Braille displays and notetakers allow users to access digital content, including emails, websites, and e-books, through tactile feedback. Importance of Braille Braille is vital for literacy and independence among people who are blind. While audio technology is increasingly available (such as screen readers), Braille remains indispensable for developing spelling, grammar, and tactile literacy skills. It ensures access to a wide range of fields, from education to employment. Challenges and Advancements Challenges include the high cost of producing Braille materials and devices, as well as limited availability in some regions. However, advances in technology, such as affordable refreshable Braille displays, are helping to bridge this gap. Braille's impact extends beyond language; it is a tool of empowerment, inclusion, and equality, ensuring that individuals who are blind can fully participate in society. Read more about the story of Louis Braille [http://www.pathstoliteracy.org/story-louis-braille]. Learn the song for celebrating Louis Braille’s birthday! [https://www.pathstoliteracy.org/resource/celebration-ideas-happy-birthday-louis-braille/] Play the Louis Braille Timeline Game [https://www.pathstoliteracy.org/louis-braille-timeline-game/]. Written as part of the Disability Support Community Articles. More can be found here  [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/ArticlesResourcesAlphabeticList_233701/] If you have a condition or 'Awareness Campaign' that you feel we should recognise please message either myself @MistyMagic [https://www.7cups.com/@MistyMagic] (teens and adults) or @AffyAvo  [https://www.7cups.com/@AffyAvo](adults)
emotionalTalker2260 profile picture
Chronic illness flareup
by emotionalTalker2260
Last post
Sunday
...See more Hi there, so a bit of a rant here  I’ve been diagnosed with hEDS earlier in the year, and I’m currently going through a pretty bad chronic illness Flareup. I don’t really know what to do because it’s never been this bad and gone for this long. I’m heavily fatigued, my stomach isn’t even doing what it should do (not working much), and I’m practically stuck in bed due to constant dizziness and heavy fatigue. And all of this is making me quite miserable to be fair. any tips on what might help? I’m so lost
SmollPeridotsBreakdown profile picture
Coping with chronic pain/illness
by SmollPeridotsBreakdown
Last post
January 17th
...See more I've had a lot of issues with POTS (postural orthostatic tachycardia syndrome), chronic pain, fatigue, and more along with mental issues. I was only diagnosed with POTS very recently, which it has been a bit of a help to have the diagnosis because I am better believed when I talk about my issues and I have a bit more access to help. However it has also been incredibly hard, I only got diagnosed because my symptoms have gotten increasingly worse (main thing that led to actually being believed and getting the diagnosis was fainting at school) and I'm not sure how to deal with it, I have terrible pain in my hands and legs almost constantly, I can't stand without moving a lot for more than maybe 10-15 minutes or else pain becomes worse and I get very lightheaded. I'm trying to work with people to make life feel liveable again but the pain alone has become almost unbearable. So that's why I'm reaching out here, I'm open to any ideas to help cope mentally with it all as well as any sources of pain relief. 
CheerySandi profile picture
Does anyone use electric wheelchair due to low muscle tone?
by CheerySandi
Last post
June 3rd, 2024
...See more Does anyone use electric wheelchair due to low muscle tone? I use electric wheelchair and i have got personal assistance for tasks where a lot of physical strength is required. I am glad that i have so much support.
jesusredeemedme2425 profile picture
Anyone Have Tourette's (or Know Someone Who Has It)?
by jesusredeemedme2425
Last post
May 26th, 2024
...See more I have mild Tourette's. I have vocal tics (meow/roaring, moaning, and other embarrassing and only partially controllable sounds), verbal tics (saying random words, verbalizing part of a conversation I'm having in my head- you know how we all daydream about convos we want to have! Mine just get verbalized sometimes), and physical tics (nothing too specific, just movements at random and such). My tics are usually hideable, but the more stressed I get, the more noticeable they become. I "rawr-ed" in the bathroom the other day and my mom heard it. It was kinda embarrassing. Does anyone else deal with Tourette's, or know someone who does? Please use this as a safe space to share your stories and anything you've learned, anything that helps, ways of getting people to understand and accept your tics, or anything else you'd like! <3
Emm22 profile picture
Help and suggestions
by Emm22
Last post
March 31st, 2024
...See more I have cronic pain in my thighs and it really hurts but thankfully not all the time. Last night it had a really bad peak and I didn't know what to do. It really hurt and there was nothing I could do. I was sitting there crying and it was making me feel sick and I couldn't think straight so I didn't know what to do. I also didn't want to bug my family or friends because they don't know what to do so I had to keep to myself. I found heat is the best thing but I was wondering if anyone else had ideas?
brightCity5374 profile picture
New addition to the spoon theory
by brightCity5374
Last post
March 25th, 2024
...See more Table set theory Fork is functioning, plate is sociability , knife is mental strength, spoon is energy, and cup is mood In accordance to another analogy Other people can fill your cup for example this morning _____ had 10 spoons, 10 forks, 10 knives, 10 plates , and a full cup
Fighting99 profile picture
Chronic Fatigue Syndrome
by Fighting99
Last post
March 20th, 2024
...See more Lend ears, give hope and support for those with Chronic Fatigue Syndrome
cocoteapot profile picture
tourette syndrome
by cocoteapot
Last post
February 28th, 2024
...See more My husband is diagnosed with TS. Just wondering if anyone here has TS or know someone with TS? It will be good to connect so my husband knows he is not alone. Thanks!!
sociableCucumber4742 profile picture
asking for ideas
by sociableCucumber4742
Last post
February 28th, 2024
...See more hi, I want to make a dating group for muslims who have cfs/ME. any ideas how I can do this?
MildJo profile picture
A student with IBS
by MildJo
Last post
January 24th, 2024
...See more Hi, I know it's a long text but I would appreciate anyone's point of view or experience💕 I'm Rose a high school student. I've been having trouble with my health since middle school and it's really been getting worse these past year - especially the past two months. I have this thing called IBS (irritable bowel syndrome) but I also struggle with migraines. IBS is a common digestive disorder characterized by abdominal pain, bloating, and changes in bowel movements. Its exact cause is unknown, but it is believed to be related to gut-brain axis dysfunction, stress, and food intolerances. It can be managed through lifestyle changes and medications, but currently has no cure. I've been "diagnosed" with IBS in 2021. My type of IBS causes me to have pretty bad chronic pain and to feel nauseous. Throughout my battle with this disease I have good weeks, but also bad weeks. I've been doing the fodmap diet which helped make my life quite normal again, but this year has just been ***. I don't even know what to do anymore. I know two and a half years of this thing doesn't sound that bad, but hear me out. When I need to test new foods to add to my diet it might turn out to be a "bad" and cause me abdominal pain, bloating and nausea. From then on it depends. I might not be able to get back on track with life for a week because the "bad" food I ate causes me to have flare ups (after I eat) of pain and bloating even if I would eat the food that doesn't cause me abdominal pain. But maybe I will be totally fine (that doesn't happen much though😔). To get back to my story. I've been having the bad weeks for about two moths now I think. I've missed probably one month or more of school on and off. This caused a lot of problems with my family. To give you more inside; One time me and my mom went to one of the doctors to help with my IBS and he got an idea that my mom really loved. The idea was that I should try and push trough the pain and everything will be back to normal. But from my experience it's pretty hard to push through and ignore chronic pain. Back to the story. Well my mom just wants me to push trough the pain and move on. But it hurts so damn much and I'm not that strong to be able to ignore it anymore - it's been really bad these past few months. When a school morning comes I'm exhausted from the night, because I've been in pain most of the night without getting enough sleep, and I just don't have the energy to go to school. When she comes into my room to wake me up and hears me telling her I can't go to school she gets super angry and stressed. She knows every day more I spend at home the more trouble and stress I'll have trying to get back on track with school work (I'm an A student for contexts). Mornings like that we end up yelling at each other and just *** about one another. Long story short my father usually interferes and supports me staying at home which causes them to fight too. I feel so bad for being the reason for that. And because the past few month have been so awful their fight escalated too. Just this Monday my mother came back to my room, after I told her I won't be going to school that day, and she was sobbing, frustrated, angry (basically any emotion you can think of) and started to yell, cry and question me why am I doing that to myself, to them, if and I quote "want them to get divorced" because I seem to not be wanting to get better by lying in bed all day feeling sorry for myself. I don't know what to do anymore. I've been trying for so long to get back up every time IBS causes me to fall, but I just don't have the energy to get back up and try again, because there's no cure to it. It never stops man! I've been to soooo many doctors in the past few years and they tell me I'll need to figure it out myself. Jesus man I'm not even 16yo yet, but I'm suppose to do it alone? How can you expect me to do that?! Please I'm begging, has anyone had a similar experience with IBS, family, health...? Please I need help I have nobody. I feel so alone in this 😔
norabell profile picture
hEDS and POTS
by norabell
Last post
January 24th, 2024
...See more Hello! I’m 16 and newly diagnosed with hypermobile Ehlers danlos syndrome and postural orthostatic tachycardia syndrome. I’ve been having a pretty difficult time and am looking for others going through similar things. I try to talk to my mom and therapist, but they just don’t know what it really feels like. I just really want to connect with others to try to feel less alone.
sociableCucumber4742 profile picture
I want company.
by sociableCucumber4742
Last post
January 24th, 2024
...See more anyone here suffering from chronic fatigue syndrome? I am severe and I am so frustrated of repeting the same boring and painful day everyday. I want any kind of change, but those who have it know we are extremely limited by our mental and physical capacity. anyone wants to chat about it and think of ways of having a bit of fun?

Welcome to the Disability Support Community!

This is an inclusive community where people can seek and provide support and post about topics related to learning disabilities, chronic pain, chronic illnesses and conditions, physical disabilities and developmental disabilities. You are welcome to join in even if you don't used disabled as a label for yourself.

There are a number of ways to get involved and be supported. We have a pop up teen chatroom and a 24/7 adult chatroom.

There are guides for Chronic Pain and T2 Diabetes
There are Q&A sections for Disabilities and Chronic Pain

Members may connect with a listener who has disabilities, chronic pain, cancer, diabetes, adhd or autism listed as a topic and there are listeners with disabilities supporting people with disabilities

We encourage people to post new threads and respond to others in the forums! Some good ways to get started are to introduce yourself and to join our tag list to be notified of weekly check ins and events. We also have an Interview Series: if you would be open to sharing more about yourself and want to be interviewed.

Looking to be even more activity in the Disability Community? Join as a leader!

*Note we are inclusive of all disabilities but ADHD and Autism each of their own communities which may be of interest to some of you.

Community Guidelines

🌟 Please be respectful of everybody's thoughts and opinions.

🌟 Don't think you are alone, so please share

🌟 Please be patient if you feel like your concern hasn't been addressed yet; we are working hard to add more leaders and supporters.

🌟 If you have any concerns, reach out to a leader or make a post.

🌟 For Listeners only - please remember that you are here to give support, if you are seeking support then please switch to your Member account.

🌟 Most of all - don't forget to be awesome! You are loved and accepted here, no matter what!

Guidelines For Using AI 


We all want the Disability Support Community to be a safe place where people are able to be their authentic selves and receive support. We understand that AI tools can be helpful in reducing barriers, allowing people to better express themselves, and allowing those with some disabilities to be able to read, write, and post, but excessive, or complete use of AI can feel robotic and reduce supportive person-to-person interactions. It can also lead to false impressions of the poster. We want to try and avoid this and help our Community to be as inclusive and as welcoming as possible to all users.


What is AI?

AI is short for ‘artificial intelligence’ which is software, a program or algorithm that works to sort, order, and combine data to give a response or answer to a question or input. Artificial intelligence is the ability of a computer, software, or computer-controlled robot to perform tasks that are commonly associated with the intellectual processes characteristic of humans, such as the ability to reason. As yet no AI’s match full human flexibility over wider domains or in tasks.

Some of the most common examples of AI in use today include: 

  • ChatGPT: Uses large language models (LLMs) to generate text in response to questions or comments posed to it. 

  • Google Translate: Uses deep learning algorithms to translate text from one language to another. 

  • Netflix: Uses machine learning algorithms to create personalized recommendation engines for users based on their previous viewing history. 

  • Tesla: Uses computer vision to power self-driving features on their cars.



If using AI tools please adhere to the following:


  • Include some of your own personal expression. This could come from a detailed, personal prompt to the AI tool or include some of your own words with a post.

  • Cite which AI tool(s) you used, which applies both to AI-generated and AI-edited text as well as images too. For instance, if you use Dragon to voice type then say so and if the text is AI-edited include that fact too.

  • Avoid posting misinformation. AI sometimes creates personalized anecdotes, facts, or references. If you are sharing an experience, don’t post an AI-fabricated one. If posting information check that it is correct and aligns with trustworthy sources.

  • Cite the source of your information. It can be important to know and understand the source of information posted, AI-generated content may draw information from their database so try and use factual sites that can be checked and that aren’t misleading.

  • Don’t make threads in excess. AI can make it fairly quick to create a lot of content. We want to give everyone’s posts a chance to be seen. Please don’t post a large amount of threads in a short period of time, this is called ‘flooding’ and can prevent other posts from being seen.

  • If you do feel like there’s a lot you want to state on one topic, consider making multiple posts within the same single thread. Or create your own ‘Disability Diary’ thread and post there, this will increase your visibility, and those who reply will be notified when you add another post.

  • Follow the guidelines. You are responsible for what is posted from your account, even if AI was used in the creation of the post, so please double-check what you write and post!


For more information please read this post by @Heather225 - 7 Cups Community Director.


Do’s ✅  and  ❌ Don’t List:


Do - Humanize your post with your own expression and words

Do - Cite the AI tool(s) you use

Do - Make ONE thread and post to it if there are several posts you want to make

Do- Read things over and ensure the guidelines are being followed

Don’t post something that is entirely AI-generated with little input from yourself

Don’t post misinformation

Don’t flood the forums with AI threads, or multiple threads


If in doubt please ask @MistyMagic  (Adults and Teens) or @AffyAvo (Adults) or consider joining the Disability Community Support Team. More information Here







Community Leaders
Community Mentor Leader
Community Mentor / Teen Community Star
Group Support Mentor / Teen Star