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#invisibledisability

thechaoticbookwyrm · 1 year

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I'm struggling today; struggling to figure out who I am and become confident in my identity as a disabled person. Struggling to accept myself as I am because, I feel like there is SO much that my body should be able to do that it just can't. Add starting up physical therapy again on top of it, and my will to live is seriously dwindling... I hate the way they look at me, and I hate the way they make me feel. The pity on their faces kills me. Tomorrow we're going to the zoo, and I have to use a wheelchair or I can't go.. and that too hurts me. It shouldn't but, it does. I just wish I could be "that" girl for one day, the healthy girl that I never got to be. #chronicillness #chronicallyillauthor #ChronicPain #ChronicPainLife #ChronicPainAwareness #Insomnia #InvisibleDisability #InvisibleIllness #InvisibleIllnessAwareness #Spoonie #NoSpoons #SickAutoimmuneDisease #sickgirlproblems #sick #wheelchair #BabeWithMobilityAids #TheysWithMobilityAids #emotional #alternativegirl #shethey #Depression #dysphoria #DisabledCreator #disabledbutnotreally #disabledandcute (at Ingleside, Illinois) https://www.instagram.com/p/Ckj-8O5N3MD/?igshid=NGJjMDIxMWI=

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fitnesscat22 · 2 years

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Oogie Boogie Bash was a smashing success! We seized the day and partied with the villains! Filled with glee and splendor, seizures and surprises, a New Video lurks in the new future, I can see it in my gazing ball! Keep an eye out and check the link in my bio to find your way to our spooktacular videos! #OogieBoogieBash #Disneyland #DisabledNotUnable #Disabled #InvisibleDisability #TBIWontStopHer #BrainsAreCool #BrainInjuryAwareness #Seizures #SeizeTheDay #Villians #Wicked #OogieBoogie #Ballet #Dancer #UsedToDance #SeizeTheDanceFloor #Vestibular #Balance #WheelChair #BrainToBodyConnection #Fun #Halloween #DontStompOnYourFresh #YOHOGA https://www.instagram.com/p/CiQVs0dvvvq/?igshid=NGJjMDIxMWI=

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raseforcrps · 2 years

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Posted @withregram • @invisibledisabilities EXCELLENT NEWS! Invisible Disabilities Symbol signed into law on June 30, 2021 by Governor Jared Polis! [Symbol is optional and voluntary]. Colorado’s HB21-1014 Disability Symbol ID Identification went into effect July 1, 2022. The bill adds the voluntary option for a person with a disability to request that the Department of Revenue place a discreet disability identifier symbol on the person’s driver’s license or identification card. The symbol represents all types of disabilities, such as cognitive, neurological, or physical disabilities. This has been available in Alaska and was also just passed in Utah! The Invisible Disabilities Association is in conversations with other states, too. For more info NationalDisability.ID It takes many, many hours and lots of funding to create bills and bring awareness, education, support and resources. Please consider supporting IDA monthly, yearly or through our annual IDA Awards Gala Fundraisers. IDA is working hard to make a difference in your community and around the world! Thank you! The IDA Team Invisibledisabilities.org #invisibledisability #invisibledisabilities #nationaldisabilityid #chronicillness #chronicpain #hoh #autism #hiddenillness #invisibleillness #legislation #dmv #stateid https://www.instagram.com/p/Cgujs9aOZlC/?igshid=NGJjMDIxMWI=

#invisibledisability #invisibledisabilities #nationaldisabilityid #chronicillness #chronicpain #hoh #autism #hiddenillness #invisibleillness #legislation #dmv #stateid

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dearlordsanta · 2 years

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For Better or For Worse in Sickness

It’s been a while since I posted on here, I think because it’s been helping, so I don’t feel like I need to do it as often. I’m going to commit to doing it more regularly though because on the off chance someone is reading it and it’s helping in any way, shape, or form, I will continue. This is a long one, so buckle up.

First, I want to talk a little about my relationship with my husband. We’ve been together for almost nine years and married for just over four of those years. When I met him, I was two years out of an on-again/off-again relationship and was really struggling with it, so I wasn’t looking for anything serious. He and I worked for the same company, but at different retail locations. One day, I was asked to cover at his location, which is how we met, and we both did something a little quirky that made it easy to joke around and have fun at work that day. We both carried our Nintendo 3DS in our back pockets to collect Street Passes. We were both teased by coworkers about it at our respective locations, so we bonded over the 3DS and this odd little quirk of ours. He also made fun of how I spoke due to the odd colloquialisms I used. He left a lot earlier than I did that night, but I figured since we got along so well, I should see if he has social media so we could stay in touch, so I decided when I got home that night, I would search for him.

When I got home, even though it was very early in the morning (about 1am since the store was far away and it was the holiday season and all that), I booted up my laptop, got on Facebook to search for him, and noticed I already had a friend request from him that he had sent when he got home from work that night. I quickly accepted and sent him a message. To my surprise, he was still awake and responded immediately.

We spent the next few days messaging back and forth from the time we got up until we went to sleep, and even made plans to hang out in a shared day off we had coming up in about two weeks’ time. We had decided that he would come over and play Mario Kart (he had been bragging about his mad skills and I wasn’t too bad myself), then we were going to see a movie we both wanted to see and go to a popular local diner after to talk about it. The week before this hang out, he said that since we were hitting it off so well, he wanted to make this hang out a date instead. I was really skeptical about this. I wasn’t sure I was ready for a relationship or anything, I had been on a few dates since I had broken up with my previous boyfriend, but never felt ready, so it never went passed date two. I liked this guy and didn’t want to miss out on a really great friend if this dating thing didn’t work out. Plus, this hangout was starting out at my parents’ house playing Mario Kart with my dad and my youngest sister! It felt wrong (lol). So, I told him all that. He said if it didn’t work out, it didn’t work out, but there was no harm in seeing where it went.

I was nervous about it, so I knew he had been a type 1 diabetic his whole life, so I did research and learned as much as I could about it. I figured if we were going to be spending time together, I should know more about it, so I was prepared. (He was very touched when I told him later that this was how I prepared for our date.)

The date went really well, in case you didn’t guess. It took me a few weeks to get on board with making it official, but after two weeks, we were officially ‘dating’. We’ve been together ever since. He’s one of the funniest people I know and we’ve helped each other grow into better people. We had a lot in common, but the best part about our relationship is our communication. It sounds hokey, but it’s true. You can’t have a good relationship with anyone without good communication whether it’s a lover, a friend, a parent, or a sibling, it doesn’t matter. Good communication is always important.

If you’ve read any of my previous posts, you know my husband is ill. About a year after we got married, he started to get sick and now he’s been unable to work for several years at this point. Within that first year of diagnosis, he gave me an out. He said that he was in this for the long haul, it wasn’t going to get better and he knew I wanted to have kids and he wanted me to be happy, not to suffer with him. I told him that my vows meant something to me. I married him for a reason and I wasn’t going to leave just because it was going to get harder. This was not an easy decision. I have wanted to be a mom more than I’ve wanted anything in my entire life, but with the way things are, it’s just not feasible. I am still frequently dealing with that part of it, especially as I get into the latter part of my “childbearing years”, but I’ve been working with my therapist on that because, as I said, my vows mean something to me.

He has Diabetic Gastroparesis which, to put it simply, makes it hard for your digestive system to do its job. Symptoms include vomiting, nausea, abdominal bloating, abdominal pain, a feeling of fullness after eating just a few bites, vomiting undigested food eaten a few hours earlier, acid reflux, changes in blood sugar levels, lack of appetite, weight loss, malnutrition, and fatigue. This has made it very hard to control his blood sugar levels, which has its own side effects, and the weight loss makes it even more difficult because that causes the amount of insulin that he needs to take to fluctuate.

The worse thing that can happen with chronic diseases, is having one that not many doctors know anything about. For years one of the worse symptoms for my husband has been fatigue. He sometimes sleeps for 14-16 hours a day and is still exhausted. Sometimes he sleeps more, sometimes less. He’s always in pain, but that fluctuates too. On good days, he’s at about a 2 on the pain scale and on the bad days, he can’t even move...I always say those days are a 12 on a scale of 1 to 10. He has been told for the last three years that he needs to get used to it because this is the way life is now and he should be able to manage it enough to work. Unfortunately, that has not been the case. Recently, our PC doctor recommended a new gastro doctor who has been wonderful. He is the first doctor that has listened to my husband and agrees that his symptoms are not within the norm and the new doctor is fairly certain that there is something else in play here. This alone has improved the mental health of my husband exponentially.

During one of his good days last week, he got online and did a ton of research on his elevated fatigue. He found that he has almost every symptom of Chronic Fatigue Syndrome. Symptoms of Chronic Fatigue Syndrome are fatigue, problems with memory or concentration, sore throat, headaches, enlarged lymph nodes in your neck or armpits, unexplained muscle or joint pain, dizziness that worsens with moving from lying down or sitting to standing, unrefreshing sleep, and extreme exhaustion after physical or mental exercise. So, he pushed himself and went to our PC doctor one day to talk about it. She agreed that it was possible and ordered bloodwork. Bloodwork came back today and according to those tests, he was right. He was so relieved.

You may think relief is a weird thing to feel after having a second difficult to handle chronic diagnosis, but what you need to understand is, that when people have an “invisible illness” or “invisible disability” they are constantly having to defend themselves. We get a lot of eye rolls, uneducated advice, and hurtful statements such as “he’s just being lazy” or “he just doesn’t want to work”. We’ve received treatment like this from family, friends, co-workers, and strangers on the internet. Tell us he just needs to go outside and push himself to exercise when he feels like he can’t move and to “just eat” because it’s “not that hard”. Sadly, this is not likely to stop with the new diagnosis.

As hard as this whole journey has been, and will be, I am glad I decided to stay with my husband. Having someone in your corner makes a huge difference. As hard as it’s been going through this together, I can’t imagine how much worse it would be if he was going through this alone. I had to push him for over a year to get a third opinion because all the doctors were saying “this is your life now, get used to it, and get back to work.”

A lot of people ask me why I stay if I am so frustrated and sad all the time. Like I said, my vows mean something to me. I married this man for a reason. I don’t believe in destiny or fate because that would mean there is a reason behind the terrible suffering some people have to go through, and I can’t believe that.

I love my husband. Part of the reason I write here is that if I vent out how upset, frustrated, angry, or sad I am about all this, it hurts him. He has enough to deal with, he knows how I feel, and it’s not worth putting him in a negative environment. Part of the reason we’ve gotten this far is that I don’t vent my daily frustrations out on him.

“Rebellions are built on hope.” So, I rebel against the negative feelings and frustrations so that we may have hope that things will get better one day, and he can have a better quality of life.

#RebllionsAreBuiltOnHope #Diabetic #Type1 #Gastroparesis #ForBetterOrForWorse #InvisibleIllness #InvisibleDisability #ChronicFatigueSyndrome #CFS #JournalVenting #EducateYourself #MentalHealthIsImportantToo #CommunicationIsImportant #Communication #LaughTogether

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monriatitans · 3 months

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Poetry Share

Friday, January 26, 2024

This poem was inspired by the Oxford English Dictionary’s Word of the Day: noodgy.

Lazy Much?

Don’t be noodgy when someone needs help with something “simple”. Shut up. Help.

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Please consider supporting through O&T's tip page or the TitansMonriArt Ko-fi! For more about TitansMonriArt, click here! Like what you see? Click here to subscribe for updates! The image was made with Canva and was, initially, posted to Medium; check it out here!

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ithappensblog · 7 months

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when life gives you lemons

My life has provided me with a ton of different roles and responsibilities that I wear with pride. But beneath the surface of a seemingly perfect exterior lies a hidden world of struggles that often go unnoticed.

Between balancing the roles of a full-time employee, mom, wife, homeowner, business owner, sister, daughter, friend, etc – it's a fucking demanding existence that I pour every ounce of strength, both physical and mental into. On the outside, I may appear to have it all together, an impression further complicated by societal expectations and appearances. But the truth is, each day is a battle against invisible physical disabilities and mental health struggles.

While my weight might seem to provide you with the most visible aspect of health problems, it's merely a fraction of the complexities I face. My weight is something I've always wrestled with and something I most likely will wrestle with like a WWE superstar for the rest of my life. However, what you can't see is that I often struggle to find the energy to complete simple daily tasks, let alone face the day's demands. Yet, I continue to push myself, driven by a society that dictates that anything less than perfection is not enough. The expectations are relentless, the standards set impossibly high. And before you roll your eyes and say, "well Jenny, just lose weight then!" like I said above, that's just a fraction of the shit I deal with. I know it doesn't help, but it's not the root cause of all my problems.

I strive to be the best version of myself in every role I play – not only for my own sake but also to set an example for my daughter. The fear of her resenting me for not giving my all looms behind me like a shadow, urging me to put on a brave face even when the weight of the world feels unbearable. I pour my energy into everything I do because I know that to do otherwise would only result in a deterioration of my health, both physical and mental. The struggles are real, and at times, they're consuming. Battling with your health while fulfilling numerous responsibilities is an exhausting juggling act, and the line between self-care and self-preservation becomes a tightrope I navigate every day. I'm not complaining by any means, just trying to give you a little bit of insight into what I know other's struggle with but aren't so open to discuss.

As I glance around at those my age, it's hard not to feel a twinge of longing. The carefree experiences and opportunities my peers enjoy seem like distant dreams for me. I remind myself not to fall into the trap of self-pity, but the reality is that sometimes, it's hard to escape that feeling. I wish for things to be different, to have the freedom to chase my dreams without all of these issues dragging me down. However, I've learned to find solace in the idea that the universe hands us challenges for a reason. These challenges, though they may be difficult, have shaped me into the person I am today. They've granted me a unique perspective on life, teaching me empathy, resilience, and the importance of self-acceptance. The journey I walk is marked by pain and triumphs, by exhaustion and moments of inexplicable joy. I push myself while also recognizing my limits. It's about finding strength in vulnerability, embracing the complexities that make me who I am, and acknowledging that the battles fought behind the scenes are just as significant as the achievements celebrated on the surface.

The roles we navigate come with challenges that often remain unseen. The struggles may be invisible, but they're real and demanding. It's important to remember that with every battle fought, every step taken, I am a fucking warrior. And while I may not have the life I imagined, I choose to embrace the path I've been given, facing each day with the hope that my challenges will ultimately serve a purpose greater than my own.

One day, maybe, I'll elaborate more. But until then, know you're not alone.

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psychdermdirect · 1 year

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Stimming

Happy Neurodiversity Celebration Week!

I was recently diagnosed with autism and did some research that answered a lot of questions that I had about myself. When I’m overstimulated by my environment or my mind, when stress accumulates, I’m in pain, or feeling weird somatic sensations around my body, I need some kind of distraction and relief. Unfortunately for me, that distraction is itching and picking. Dermatitis and allergies run in…

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#autism #disability #hiddendisability #invisibledisability #mind #neurodivergent #neurodiversity #neurodiversitycelebrationweek #neuroscience #nonvisibledisability #skin #stim #stimming

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angela-yuriko-smith · 1 year

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WIP: "Allegedly" from Hallucinated Jungle

Sharing "Alleged Confession", a poem from my current Hallucinated Jungle WIP that reflects on my potential diagnosis of high functioning autism. Part of my journey of self-discovery and personal growth through creative writing.

This poem is from Hallucinated Jungle, one of my current projects. The title is a nod to Hallucinated City (Paulicéia Desvairada) by Brazilian poet Mário de Andrade. The poem itself reflects a private stuggle I’ve been dealing with over the past year or so: the potential diagnosis of high functioning autism. I haven’t taken the final step to be officially diagnosed yet. I don’t know if I will. I…

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#AllegedConfession #AutismAwareness #CreativeWriting #EmotionalJourney #HallucinatedJungle #HighFunctioningAutism #InvisibleDisability #MárioDeAndrade #MentalHealthAwareness #Neurodivergent #Neurodiversity #PersonalGrowth #poetry #PoetsofInstagram #SelfDiscovery #SelfReflection #WritersofInstagram #WritingCommunity

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jinxtrickster · 1 year

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Bunnies are here and ready to spread cheer! They will soon be available at @merccreations.9292 Or you can order through direct messages. #kawaii #bunny #bunnies #pastelfashion #kawaiifashion #kawaiifashion #kawaiishop #cuteshop #amigurumi #plushie #crochetersofinstagram #crochet #yarnaddict #crochetaddict #makeitpremier #michaels #chronicillness #invisibledisability #ehlersdanlos #potssyndrome #disabledartist #invisibleillness #invisibledisability https://www.instagram.com/p/CofJlWrOroy/?igshid=NGJjMDIxMWI=

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christelno · 1 year

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🙏🏼 PLEASE READ THIS: Hi Friends! We need to talk. ➡️ November is #crpsawarenessmonth so it's a chance for me to tell the World about this quite unknown but extremely painful disease. 🎗Most of you know that I am sick but I am not the only one in my family: my daughter suffers from CRPS also called Algodystrophy or #sudecksyndrome The letters CRPS stand for Complex Regional Pain Syndrome. ➡️ It is a rare and very painful disease that creates to a gradual muscle wasting, bone loss and local osteoporosis. It also causes severe burning pain or a very cold sensation due to pressure soreness and circulation disorders. It is SO Painful that it can leads to depression and even su!c!de 😥 ➡️ My daughter has CRPS since 2018 and she hardly can walk or stand for more than 5 minutes. Because it's a very unknown disease there's no treatment and I often heard doctors calling it somatic just like they did for Fibromyalgia or others invisible pains. But it is visible though!!! My daughter's foot is generally bright red & swollen. And just right now, she is hospitalized because it was too much for her. 🙏🏼Please Guys, help me and other people living with Algodystrophy by sharing this or posting an orange ribbon for #crpsmonth ❤And Thanks for Reading! It's easy to talk about myself but telling you about my child was quite difficult for me since she is alone in her hospital room while I'm feeling guilty leaving her...🕊 ❤ #crpsawareness #sdrc #crpswarrior #sickchild #unknownillness #crps #crpssucks #crpsfighter #invisibleillness #invisiblepain #chronicpain #spooniefamily #chronicdisease #raredisease #rareillness #invisibledisability #childwithdisability #disability #disabilityawareness #inclusion #chronicpaincommunity #chronicpainlife #spoonie #spoonielife #spooniewarrior #spooniesupport #childspoonie https://www.instagram.com/p/ClDAoYDKBPz/?igshid=NGJjMDIxMWI=

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phantomfacestuff · 2 years

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I wanted to ask anyone out there who uses Fentanyl patches to help with their pain how they get on with them? I find that as it gets to about 65 hours (they normally need to be changed after 72hours) I can really notice them wearing off. I start getting a lot of breakthrough pain and I start to feel quite ill and tired. I find that the Fentanyl has the unpleasant side effect of causing constipation but on the day the patch is due to be changed I get really bad diarrhoea. Does anyone else find the dose doesn’t seem to administer evenly or is it just me? I also have a lot of trouble making them stick! I used to use Tegaderm dressings over the top to keep them on but they ripped my skin so I changed to hyperfix but then you can’t see if there is any water under the patch either from sweat or from having a bath, swimming etc… I’d be grateful for any ideas or feedback. I’ve been on the patches for 18 years and tried different brands but Durogesic seem to suit me the best. The only trouble is that as the dose goes up the bigger the patch and the thicker the patch. TIA xxx

#neurologicalpain #pain #phantomfacepain #trigeminalneuralgia #anaesthesiadolorosa #neuropathicfacialpain #neurologicalfacepain #neurologicaldisorder #painfulnumbness #ehlers danlos syndrome #fatigue #chronicfatigue #eds #invisibledisability #invisibleillnesses #chronicdisorders #phantomlimbpain #spoonies #spoonie

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dfunkmale · 2 years

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Been working behind the scenes on some health stuff the last couple months. (Mostly fighting with insurance) My disability is pretty hard to notice from the outside but I've been having a pretty rough go of it for a while. But I've slowly been making changes to improve my sleep and overall energy level with the eventual goals of improving my fitness and ability to cut through capitalist nonsense to make more better art. The great American rock album isn't gonna write and record itself after all! This is me after a very short (by past David standards) run. And I feel like I still have energy/focus for the rest of the day so that's rad! Excelsior, goddamnit! #SleepApnea #FuckSleepApnea #InvisibleDisability #Running https://www.instagram.com/p/Ci-gWVlunLu/?igshid=NGJjMDIxMWI=

#sleepapnea #fucksleepapnea #invisibledisability #running

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piperjdrake · 2 years

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Taking a break between classes and breakout sessions to enjoy the pool is one of my favorite things to do on a port day when most of the other passengers are off ship doing excursions. . The travel and hard work behind the scenes as an instructor/ staff member has been hard on my spine and nerves, so the pool has given me some pain relief by taking the weight off everything and reducing inflammation. . #writerlife #cruise #cruiselife #writingcommunity #writingretreat #invisibledisability #traveladdict #travel #thosewhowander https://www.instagram.com/p/CikU8IIOMDk/?igshid=NGJjMDIxMWI=

#writerlife #cruise #cruiselife #writingcommunity #writingretreat #invisibledisability #traveladdict #travel #thosewhowander

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