finally I'm about to talk about my disability & related topics
First of all I would like to add a Trigger warning, please consider all your triggers before reading this, although it's mostly about disability.
Where to start?...
Well I start with the fact that I'm greatfull for every part of my life that I don't have control over. and that includes some of my physical health challenges too~
I remember most of the time that I would talk about recovery from surgery etc, I would usually post the thread in "General support" never in disability support community.
One day I saw my post moved to this community. Ar first I got mad, I'm not diagnosed with disability!. I'm don't have... I doesn't... I.. I
And those thoughts end up with: I don't want to accept I have disabilities..."
Now it feels like the right time to start putting emotions into words and actually talking about disability.
Ps it's hard for me to translate my ailments into eng so I won't name them properly, thanks for bearing.)
From child hood:
I remember feeling lots of pain (specially in my legs or arms) sometimes. Or I would got fractures & casts often.
My body was very fixable ( I was great at swimming & gymnastics at the age of about 5)
Whenever I would stop working out (specially during school days) the pain usually would get worse.
My family helped me & supported me. They took me to any doctor that was necessary or would help me when I was in pain.
But my country's medical system is very very poor...
I remember one of my feet's finger's got dislocated when I was about 13
We went to a hospital, after taking the scans etc, they casted my dislocated finger with temporary cast (thank God it wasn't permanent)
We returned home, I spent a one night with an dislocated finger in a temporary cast... Until we went to a very expensive hospital tomorrow about time of 8 am,
Their doctor took som more focused scans & etc, he was assuming it was fracture too... Until he sent my picture to his teacher who was out of my country, his teacher told him about my true condition of finger.
Then we went to another clinic & they fixed it or whatever it's called.
Now that I'm talking about it, everything could have gone way worse. I even don't want to imagine how awful things could happen out of the lack of knowledge of doctors and other factors.
Woah, I talked so much, I'm sorry but there's still so many things that I want to share, I'll probably be adding latter.
I just can't be greatfull enough about each miracle that Lyes within my life...
Every situation, medical challenge or etc, that could lead to things that I don't like to think about,
Thank you God, & the great 14 persons.
And thank you to evry human that deserves a thanks for me~
until next time~
@NobleSeeker Heyyyy good to see you and welcome officially to the Disability Support Community!
You have experienced what quite a lot of our members go through. It is a difficult journey to acceptance and sometimes a few never reach it. I lead this area and your words hit me hard. You have clearly stated what so many think of the word 'disability'!
"Oh that's not me!"
"I don't have one of those!"
"Why was I included?"
"What has disability got to do with me?"
Well . . . I like to think that 'disability' is to do with everyone! But, like most I hate the word and the stigma, the negative connotations, the sheer meaning of disability!
You Are Not Alone in thinking this!
I don't know what to do about trying to make disability more inclusive so maybe we shouldn't try, and instead we can just ignore the word and skip straight to Support Community instead :) 😄 :)
OK so now to your post . . .
That took guts, and shows you are very brave, but I feel people have been saying that all your life? right? Still, I will say it again and add my thanks for sharing a part of your life experience.
What helps you cope?
What tips can you share with other young people?
What plans do you have going forwards?
Lets hope many more post here too! And come and say well done for posting here.
@MistyMagic
Thank you very much for taking time and saying such beautiful words to me<3 I'm glad to be here, it feels comfortable sharing & etc.
And I'm sorry I know I talk too much like saying the unnecessary stuff <_<
Now,
What helps you cope?
Having the emotional support of my family,
my faith,
and lastly, I know it sounds weird but, having a bro who shares my disability ailments or even at a higher level helps me to cope.
What tips can you share with other young people?
I don't think it ever hurt to consult a professional doctor just for a complete physical health check up (specially if someone in your family suffer/ suffered from an physical ailment).
Having an life schedule that include healthy food & sports usually helps a lot (preferred a schedule given by your doctor)
Most importantly, please don't let your anxiety or family stress stop you from reserving medical support.
What plans do you have going forwards?
I like to always have an exercise tool in my house when I move out (like an treadmill)
And I think it would be a nice plan to reserve support from my counselor about how disability is affecting my mental health And how depression etc is stopping me from doing exercises right now.
As promised, I'm about to talk again! (As if I don't over talk already, oops)
Let's start with today,
I did some research on the internet
Your toes cracking endlessly can be arthritis, or something similar. I just hope it isn't.
I tried to search about my disabilities,
But the fact that I have to translate and try to figure out most things is frustrating sometimes. Oh and also I realized I had suffered from chronic Pain, Im not sure if I'm suffering from it atm or not.
The ignorance of my doctor is so overwhelming sometimes...
Like the time I told you about my dislocated finger...
Two of my doctors told me I'm diagnosed with something (Wich I don't remember the name) that means I have weak Bones & muscles. I should do exercises at least once a day, other wise I would feel pain or the pain would get worse.
Watching my dear brother who suffers from disability without receiving the support he deserve...
I share some of his disabilities, we believe we have so many ailments from our grandmother by DNA...
Please pray for him, it's heartbreaking when his arm would get dislocated so easily, I guess he is special...
He told me if he were a citizen of USA, the government should pay for him completely, because his disabilities are so critical,
Yet he is working with my dad... Because my country is so brilliant (note the sarcasms)
And I believe it's enough for now~
Until next time~
Thank you for listening...
@NobleSeeker I was about to reply to your previous post and then you posted again :)
Your brother sounds very brave and an inspiration to you.
I will also say that googling is something that we all do but which really we need to gather more evidence and make sure that the information is checked and from a real and reputable source, not forums and opinions but a University or a Hospital or some professional body , and is up to date! Just check your facts. That was the first thing I learned at University lol and it was so important.
@NobleSeeker
so sorry were you live the medical system not very good yes it hard to accepted ones disabilities we had to go through that too only different is family' no support us and call us bad things like lazy
but we in USA so after age 30yr we was able to get help and get on SSI but it hard to get on even if truly disabled sadly hope you get the medical help you need going forward
you are very strong and a blessing too
@stormieandpaws
Hey, thanks for replying & supporting me. Your so kind 🌱
@NobleSeeker
your very welcome we here to support you on your healing journey hope you having a good day
@NobleSeeker Sorry it was uncomfortable to have you thread moved!
We do have this in our intro - 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.
But I think there's often confusion about whether or not disability support is right for someone.
I also very know what you mean about not thinking of yourself as disabled. I went through quite a while where I was questioning that - and that was after a few different issues had piled up, in hindsight I was disabled before that point but not sure I would have ever considered myself that way if I hadn't have ended up sicker and had the new issues.
I don't know if an ideal medical system even exists, it seems like they all have their issues, and many make things more difficult than they need to be.
Wishing you all the best as you sort it out!
@AffyAvo
Hi there, thanks for considering my emotions.
When I was talking about my post being moved, I wanted to say how it helped me to accept I have disabilities!
So I'm glad they moved it : )
I very much appreciate the way you listen & replayed to me.
And hey, I read about your physical challenges in your bio, I can only imagine how strong you are, I'm proud of you for fighting through it.
Please stay wonderful
@NobleSeeker Your post was very thought-provoking- thanks for taking the time to write it. I think if I had a post to moved to a different sub community, I might feel invalidated somehow or upset, regardless of where it was moved to, so that’s very valid.
I liked what you said about your relationship to the word disability and how that evolved into acceptance. I still struggle to accept I have a disability (by my country’s definition), after being diagnosed with epilepsy almost 10 years ago. In a place like 7 Cups, one thing I think is so important to consider in the forums is the words like “disability” or even specific diagnoses can have such a broad range of meaning and impact globally. With that said, it does brings me peace knowing I’m not alone in being affected by a label assigned to me by someone else, whether it’s a medical doctor or another member on 7 Cups who moves your post to another sub community.
The word disability can so easily be used against someone for different reasons, which is unfortunate. It can also be empowering. For some people, accepting the word disability as part of their identity can help gain access to resources and accommodations they might not have access to otherwise. It can provide a platform for people who want to give a voice to those who aren’t able to advocate for themselves. Through conversations in forums like this, it can be used to raise awareness and hopefully change negative perceptions of what having a disability looks like/doesn’t look like, feels like, and how it affects a person being able to navigate life.
I wish the best for you and your brother. Thanks for being here 🌺