Invisible Disability

I have been feeling really under appreciated at work lately but also on the defensive. Due to my lupus I have an arrangement with my boss that allows me telework after working outdoor events or if I’m having a flare. Well that’s been happening a lot lately but I try to go in the office at least once a week. Anyways to get to the point of my story, when I’m on the office I get comments like “Oh you’re here, I wasn’t sure you still worked here” or snidely “Where have you been?”. It’s so hard to not get snarky because when I’m not at work I’m either in bed or at a doctors appointment or in the hospital. That’s it! I have to use all my PTO for my illness. I don’t get to take a week off for a vacation nor could I afford one since being sick is so expensive in the U.S.

Has anyone else experienced similar social situations?

#ChronicFatigue #ChronicPain #Lupus #AutoimmuneDisease #Ableism #InvisibleIllness #InvisibleDisability #SayTheWord

Hi, my name is lemonskinn. I'm here because I’ve just gotten another diagnosis. My doctor can’t help me, he said it’s just inflammation and chronic pain. The same type of things you’re already dealing with. So I wanted to find a community, that will help me feel not so crazy, when I’m outta my mind with pain.

#MightyTogether #Anxiety #Depression #Migraine #PTSD #MultipleSclerosis #AnkylosingSpondylitis #EhlersDanlosSyndrome #Fibromyalgia #Insomnia #ChronicPain #ChronicIllness #InvisibleDisability

Hi, my name is artsydragon. I'm here because I struggle with chronic pain in my joints and digestive issues. Neither have been formerly diagnosed but I am waiting to be seen by specialists and have been told it is likely I have a form of arthritis and possibly IBD.
During this waiting period of the unknown, everything feels really scary. I don't know what my future will look like and it feels like I am constantly fighting an invisible battle. I have come here to meet others to feel less alone in this journey, and to discover advice and tips that could help me.

#MightyTogether #Arthritis #InvisibleDisability #Anxiety #Depression #ADHD #InflammatoryBowelDiseaseIBD

So I never ever even talk about my disability or illness anymore because I know people who absolutely don't have any experience in disability will try to argue with me on my own life experiences that they have literally no experience in at all and it will make me upset so I just don't talk about it anymore except for talking about it online under disability related accounts but this time when I was commenting I forgot that this tiktoker's audience is mostly able bodied people even if she does make disability related content. I wrote something and one of her fan's got really mad at me and starting attacking me and literally acting like as if they know more about disability something they literally know nothing about more than a disabled person myself and they literally started attacking my disability and saying I'm insecure because of it and this and that and I'm just really upset and mad right now that someone with the privilege of health thinks they know more about something I have suffered because of for my entire life more than I do. I know I seriously need to just stop and just chill but I'm mad and I don't know how.
#Disability #ChronicIllness #InvisibleDisability #ChronicPain #Fibromyalgia

Hi, my name is Toristori. I'm here because I have PoTS.

#MightyTogether #InvisibleDisability

Hi! My name is Karley Gabriel and I am a doctoral candidate (and spoonie) working on a dissertation that studies invisible disabilities and well-being. If you have an invisible disability and the time, would you mind filling out this survey? The survey is expected to take roughly 20-30 minutes to complete.

Survey link: hofstra.co1.qualtrics.com/jfe/form/SV_diN5Ph8g7qwwVV4

Thanks so much for your time and consideration! 😊

#ChronicIllness #ChronicPain #MentalHealth #InvisibleDisability