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What's your condition? (Friendly discussion)

User Profile: Jem7Cups
Jem7Cups November 23rd, 2019

Hello there! It's EmpatheticJem!

I've seen a few threads on this site and have commented on some. But I thought it'd be cool if we could introduce ourselves and (if comfortable) discuss our disability and answer any questions people may have.

So to start, I have nemaline myopathy. It is a rare genetic disorder that makes my muscles weak and my joints loose. It also means that I am in chronic pain.

It doesn't get me down though! It is a part of me, and I wouldn't want to live without it 💕

Tell me about your beautiful selves. I'd love to hear from you and provide whatever support I can.

We're all in this together.

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User Profile: Aisabel
Aisabel December 23rd, 2019

My name is Liz. I have a rare genetic defect known as Coxa Magna Syndrome in my elbows. They used to hyperextend when I was young, but then my elbows shattered for no apparent reason and I had emergency surgeries that completely changed their makeup. I have Osteochondritis Dissecans which is a rare genetic bone disease in which blood supply was cut off from the ends of my bones thus killing off my cartilage and causing my bones to continuously grind down like a mortar and pestle; the coca magna making part of my elbow joint round and the other square. Because of this, I gained osteoarthritis and cubital Tunnel syndrome. I can't feel my hands due to muscle wasting, despite having had cubital Tunnel surgery. my arms constantly click and get stuck. My surgeries have been because of my elbows being filled with bone chips and irritating my ulnar nerves. I have had 9 failed surgeries and now doctors have given u . I basically live in braces and take muscle relaxers when my arms get stuck. I also have a tilted patella and a permanently sublexing left knee which not only hurts, but throws my whole body out of whack and makes it hard to walk. I had a knee surgery to pop my knee back into place and to fix an ACL tear (which led to an abnormal growth and caused 2 ACLs to exist) and clean up my joint, but my knee is permanently damaged and therefore constantly pops out of place, which makes my hip and leg hurt/go numb. I also discovered I had a similar deformity in my shoulder that has led to rotator cuff injuries. I suffer from chronic pain, migraines caused by a broken nose that ruined my sense of smell, vertigo, and fibromyalgia. I live in braces, sometimes use a cane, and had to get an office job just to keep functioning. I basically had doctors tell me I'm SOL and on my own now.

User Profile: rachsxo
rachsxo January 10th, 2020

Hi everyone! I've been dealing with a chronic tendon condition in my dominant wrist for a little over two years now. My doctors are still not quite sure what it is yet, but it causes sudden onset of pain with no known cause, and as a result, the circumference of my dominant wrist is now noticeably smaller than my other wrist. In addition to this, I also have type III hereditary angioedema which causes recurrent swelling in my eyelids relating to hormone imbalance.

User Profile: weakplaceholder
weakplaceholder January 15th, 2020

I have ADHD, A "nonspecific sensory disorder," separation anxiety, and social anxiety, but all of that can be umbrella-d under the looming shadow of Asperger's Syndrome, (or Autism Spectrum Disorder level 1). I was diagnosed with Autism very recently (under a month ago) and on the one hand, I want to tell people so they can understand if I don't pick up on social cues, but I also don't want to tell people because they'll just think of me as a "special needs kid" who can't control her emotions and is incredibly unintelligent. Has anyone here had a similar experience..?

1 reply
User Profile: RavenUkulele
RavenUkulele March 18th, 2020

@weakplaceholder

I have autism as well, people identify me as a "special needs" kid as well, it's not fun.

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User Profile: MarianneKay
MarianneKay January 15th, 2020

I have been diagnosed since jr highschool, ADHD, depression ( major depressive disorder), and bi polar. Had most under contril for most of the time. But after have birth, all went down the hill. Ok well, I sis not mean to change subject. Alnthe beat everyone.

User Profile: MatthewAspie
MatthewAspie January 17th, 2020

I'm autistic. I have a high IQ but suck at social relationships, etc.

3 replies
User Profile: weakplaceholder
weakplaceholder January 18th, 2020

@MatthewAspie ah! Hello, same. Makes stuff hard and I forget how to- exist properly? Sometimes.

User Profile: SolaraMoonstone98
SolaraMoonstone98 January 26th, 2020

I have Lupus. Lupus is an autoimmune illness often called silent illness. Becouse people can to see your unwell does not mean your okay, Lupus attacks my healthy cells in my body instead of fighting infection and attacking the infection, illness, and diseases. Lupus has many symptoms. Lupus causes me to have extreme fatigue, Joint pain/swelling, Hair loss. Allergic to the sun. Sun rashes, Kidney disease, Liver disease, Memory problems, Blood clotting, content fevers, and eye disease. Lupus affects all my organs, my skin my liver my kidney, my heart, my brain. Somedays lupus makes things almost unbearable becouse of the physical pain.

2 replies
User Profile: reginaphalange98
reginaphalange98 March 11th, 2020

@SolaraMoonstone98

I have lupus too!! It's been a whirlwind, I don't have an official diagnosis ANA positive yet but my doctor knows I'm headed that way! Mine seems to be triggered by endometriosis.

1 reply
User Profile: Happy900
Happy900 May 9th, 2020

@reginaphalange98 Your amazing. Thanks for sharing about your disability.

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User Profile: Happy900
Happy900 May 9th, 2020

@SolaraMoonstone98 Thanks for sharing. Your amazing.

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User Profile: Happy900
Happy900 May 9th, 2020

@MatthewAspie Thanks for sharing about your disability. Your amazing.

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User Profile: DYINGARCHITECT
DYINGARCHITECT January 23rd, 2020

Epilepsy...I was diagnosed with a brain infection when I was 14 and went through literal hell. I got through it with many physical and emotional scars. I was good for a few years and then something happened my senior year of high school. I started have weird spells where I lost balance and I could barely move. I didn't think much of it but sophomore year of college I almost and my parents noticed. I got checked and turned out I had epilepsy and all of those little episodes were mini seizures. Freaked my out but they were never a huge problem for me so when they started me on medication I didn't take it seriously and skipped days of doses. I ended up stayed up for three days straight and barely eating because of school finals. When I was done with my project i went home to shower and nap before my presentation. Once I got into the restroom to shower I looked in the mirror and when I looked away my eyes locked on my arm. I couldn't move. Next thing I knew I was standing in front of these mirror with a bruised jaw and a purple bruised tongue. Come to find out that was a grand mal seizur. Epilepsy went on to be something I never took seriously until last summer. I was sitting with my family about to play a game and next thing I know, my face stretches and every muscle in my body started contracting and next thing i knew I was on a stretcher being taken to the hospital. I lost my license and scared my family. Since then I have been taking it very seriously.

1 reply
User Profile: Ladoo
Ladoo April 14th, 2020

umm

User Profile: Happy900
Happy900 May 9th, 2020

@DYINGARCHITECT Thanks for opening up about your problem. Your amazing. Sorry things are rough for you. Hugs

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User Profile: goldenFriend9335
goldenFriend9335 January 24th, 2020

I have Aspergers syndrome. It makes life quite hard and makes sensory meltdowns quite common

1 reply
User Profile: ShadowDance
ShadowDance January 25th, 2020

@goldenFriend9335

A lot of people take this for granted. All the sensory information we have to process at once. I became sensitive over time and just "regular" ordinary things can become extremely overwhelming. No one seems to understand because they still have more of a filter to this information. I don't think they could live a day without their filters in effect. It would break them apart. Just like how we feel.

User Profile: Happy900
Happy900 May 10th, 2020

@goldenFriend9335 Thanks for sharing.

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User Profile: delightfulHeart4842
delightfulHeart4842 March 10th, 2020

Hi,

i have Tourette's, OCD, anxiety, depression, possibly adhd, ibs, TMJ and likely a few other chronic issues but they're currently being diagnosed/figured out! If you'd like to talk about anything to do with these things, I'm a great person to talk to because I've been there and I'm very comfortable with the conversation!

1 reply
User Profile: miniOrca325
miniOrca325 March 11th, 2020

@delightfulHeart4842 I have OCD and anxiety... they're not fun when they're mixed.

User Profile: Happy900
Happy900 May 10th, 2020

@delightfulHeart4842 Thanks for your willingness to help others. The world needs more caring people,like you. Thanks for sharing your story.

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User Profile: mandabella
mandabella March 20th, 2020

I have a few, most stem from a genetic disorder called Ehlers-Danlos Syndrome. EDS is, like I said, a genetic disorder. It effects just about everything, mostly my joints and digestive system though. It affects the connective tissue in your body, makes it too stretchy. So on an average day I dislocate both of my hips, ankles, knees, fingers/toes, shoulders, ribs slip around. It can be pretty painful, but its a part of me.

User Profile: PinkDahlia22
PinkDahlia22 March 23rd, 2020

@Jem7Cups

My List..

Depression 😭

Anxiety 😬

OCD 😓

Fibromyalgia 💜

POTS 🦄

ME/CFS 💙

Hypermobility Syndrome 🦓

Obscure Auditory Disorder 🙉

And other disorders under investigation.....

1 reply
User Profile: Goldenservicek9
Goldenservicek9 April 2nd, 2020

@JoyIntoDarkness I'm legally blind. My panic attack disorder makes the vision even worse.

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