Invisible Disability

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Invisible Disability
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    Navigating #InvisibleDisability Abroad

    If you’ve ever considered studying abroad and you have an invisible disability, you might want to consider attending this virtual panel on Navigating #InvisibleDisability Abroad :)

    It’s Monday, January 30th at 5:30-6:30 PM Eastern Time

    Here is the registration link:


    Dirty Looks

    Yes, I wear lipstick. Yes, Eminem was playing from my car. Yes, I am 44 years old. Yes, I had to get groceries before the winter storm arrived. Yes, I have handicapped plates. Yes, the car belongs to me as do the plates. (❗️AND❗️) Yes, I see your dirty looks, glaring, shaking of heads, whispering and ignorant assumptions of what a handicapped person looks like. I owe you no explanation of my disability. You are not entitled to my health history. The audacity of people to verbalize comments 'that's a handicapped parking spot,' 'stop using your grandma car,' 'I'm going to report you.'
    Listen assholes, I have more metal in my body than an aluminum can recycling center. I have Avascular Necrosis (AVN) or Osteonecrosis. I have rods, pins, plates, screws etc holding this body together. My hips went first. Bilateral hip replacements. Second, my left shoulder. Shoulder replaced. Third, knees. Bilateral knee replacements. Fourth, left ankle. Same story, same dance.
    Like most, some days are better than others. Sometimes I need a cane, sometimes I don't. Sometimes I can get in/out of my car with minimal difficulty. Other times it takes me 10 minutes to align my hips, legs and feet to the ground.
    Basically FK YOU and your dirty looks. #AvascularNecrosis #Osteonecrosis #ChronicIllness #ChronicPain #InvisibleDisability #InvisibleIllness #Disability #ButYouDontLookSick #Youdont knowme

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    Struggling to accept acceptance

    Something that keeps sticking in my mind lately is this idea of Acceptance in the stages of grief. I think that when you are chronically ill, you end up spending months, if not years, cycling through the stages of grief. We Deny. We feel Pain—both chronic, and emotional. We feel Guilt for all the things we can no longer do. We Anger at our mounting disabilities, and we Bargain. Depression that existed before, becomes infinitely worse. Anxiety or occasional Depression becomes something more permanent, that twines itself into your mental and emotional state within this vacuum of lost time.

    We Reflect. On the past, all that we have lost, the limitations placed upon our futures. Chronic illness makes philosophers of us all. And in all this reflection many of us find that we gain new insight into what it means to live, only for this enlightenment to deepen our feelings of Despair and Loneliness.

    Acceptance can be elusive.

    Often, just as you settle into your new normal, some unforeseen event upsets the balance you managed to create out of chaos. We spend days endlessly trying. The illness is trying. The uninformed world made up of doctors, carers, spectators, friends and family, can be really trying. Trying to navigate life with a chronic illness is no easy task in a society that wants us whole, or dying, without much room for anything in between. I always think of “The Beach” when they move their dying friend out of camp, so they don’t have to bare witness to his pain and suffering. In doing so, they relieve themselves of the burden of a prolonged state of grief. Nice for those who are healthy and able to lean out and turn their heads away from suffering.

    Betrayal writ large for those of us who do not have this luxury.

    This is where I have a problem with the idea of Acceptance. I can accept that my health is what it is now, and I understand why my most of my friends have moved me out of their mental village. It’s difficult for me to live with my failing health, and when you don’t know what to say, I can see how it just becomes easier to say nothing at all. What I find Unacceptable is how much support my family, my own blood, have happily accepted from me over the years, and can’t even be bothered to read up my illness as one of my friends did of her own accord. I don’t need anyone to get the words right to show up for me, it can be as simple as showing willing.

    Trying to support someone is supporting someone.

    The other thing that makes Acceptance of my new normal difficult, is that I have yet to get any formal diagnosis. In mid January it will be 6 months since my first trip to hospital. Where my trust that I can rely on doctors to support my health was thin before, it is now almost non existent. Considering all of the many doctors I saw while in hospital, failed to recognise that I was suffering from medication induced hyperthyroidism, so that the thyroxine they sent me home with only made me worse so that I eventually broke out in angry hives one morning after taking it.

    I still have some way to go in finding out what is wrong with me, but while I still have the bandwidth to advocate for myself, I will continue to search for answers. Because I cannot Accept having no diagnosis, and no direction. The only light at the end of that particular tunnel is surely a diminishing one. I shouldn’t have to Accept fighting for my health alone, but I will shoulder it in the face of having no other choice, which I guess is a grudging kind of acceptance.

    I will keep surviving and I will keep trying for as long as I am able to do so. And in the event that I succeed in recovering some of my health, I will be prearmed with the knowledge of how “happy” people will be for me; some may even describe me as being “brave” as if that means something. And I know I can count on at least one person to tell me how well I looked while I spent this time stuck on the platform between the realms of the able and the disabled. Some people just can’t help themselves, and fail to see how this presents as the most backhanded compliment you can pay to any person who has experienced long term physical disability.

    It’s all very trying… but I guess that’s why it’s called grief.

    #Grief #StagesOfGrief #MyCondition #MyalgicEncephalomyelitis #ChronicIllness #ChronicFatigue #Hyperthyroidism #Depression #Loneliness #MightyTogether #InvisibleIllness #InvisibleDisability

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    Walking The Invisible Illness Line

    I’ve been bed-bound for the better part of three months now since I had a cardiac episode due to medication induced hyperthyroidism. I’m grateful I no longer need a wheelchair and can manage a 5 minute walk with the dogs and my husband in the evenings. But for the greater part of the day, I’m still stuck in bed.

    I’ve watched so many documentaries, movies, and TV shows. And as much as I enjoy reading, cognitively; it’s become a challenge to spend the whole day focussing on small type. I find audio books to be more akin to auditory noise rather than being enjoyable, so that rules these out. Which makes the discovery of downloadable learning TV apps something of a revelation.

    I recently downloaded Coursera and I’ve been learning about learning and memory, which is both interesting and useful—in that I have the gene for early onset Alzheimer’s disease. So keeping my brain challenged in doses I can manage, will hopefully help to stimulate my brain to keep creating healthy new neural connections. Next I’ll probably do some courses on mythology but it’s a comfort to know I have a way of keeping myself occupied in a way that is good for my brain health, and my mental health. Because all that free time can make my thoughts spiral at times—which I think is natural, and to be expected.

    We are creatures of habit, yes. But we all also want to feel like we are leading meaningful lives, and I think this is the cruelest part of being chronically ill.

    Whatever you enjoyed before gets taken away. Then come the doubters… the doctors, the comedians, the social commentators and painfully, family members, or so called friends—all eager to stick their claws into you when you are at your most vulnerable. And there’s only so many times you can hear the empty words “get better soon”, or “have you tried yoga or meditation” before it starts to erode away at your soul. The truth is I think there is no way to successfully walk the invisible line of trying to make the best of your lot, and convince people that you are also chronically ill.

    The line itself is so faint, as to be invisible to most.

    Society wants you “whole” or in hospital… there isn’t much room, or understanding, for anything in between. We have to learn to accommodate the grief that comes with being socially maligned, which is something I still struggle with almost every day, alongside having to advocate for myself to get assistance to manage my health. These burdens, social, mental, monetary, access to healthcare, loneliness, and more—are not challenges that any person should have to face alone.

    But if I have learned anything in life, it is that there is always power in knowledge. So while I continue to try and navigate the invisible illness line, I’ll be learning about myths and poetry, and continue to take comfort in other people’s autobiographical tales of misery. Because being chronically ill is a tragedy, and as the saying goes misery loves company.

    #MentalHealth #ChronicIllness #MyCondition #ChronicFatigue #InvisibleIllness #Thoughts #AlzheimersDisease #Grief #Loneliness #selfcare #Disability #InvisibleDisability #MyalgicEncephalomyelitis

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    What I Want You To Know About The Person In The “Nice Parking Spot”

    It finally happened, I knew it was bound to sooner or later. I was verbally shamed for using my disability placard, right there in the parking lot for everybody to see!

    While I was loading my groceries into the car I heard a woman’s voice shout “Nice parking spot!” I looked up to see this lady staring very intently at me. And she did not break that stare even as she walked towards the entrance, as if she was trying to intimidate me. I looked back at her a bit shocked. It seemed to really bother her that I was parked there. Little does she know, the fact that I parked there bothers me too, every single day.

    Those three words combined with the look of disgust she gave me had me questioning myself all weekend. Do I really need to park there? Is losing sight in one eye really that hard? Should I have told her to f*ck right off? And the answer to all of those questions is yes! Yes, this is hard –  hard to live with, hard to be stared at for parking there and hard not to have given her a piece of my mind.

    Every time I use a disability parking spot, the questions start swirling around in my head. Before I even get out of the car, the anxiety kicks in and I move into defensive mode. Is that person staring at me? What if they say something? How am I going to react?

    Like this woman, many people are still unaware that invisible disabilities exist. With an estimated 20% of people living in the United States with an invisible disability, it is more common than people think. Invisible disabilities can consist of mental, cognitive and physical conditions that are not obvious to others. These conditions can greatly impair a person’s mobility, senses or affect their daily activities. For example #Blindness, mental illness, ADHD and chronic illness all fall under the umbrella of #InvisibleDisability. A person with an invisible disability may not require the use of an assistive device, making it appear as if they are totally fine. However, it is important to remember that we don’t see their private struggles and it’s not right to assume misconceptions about people without knowing anything about their situation.

    I owe nobody an explanation of why I park my car in the disability parking spot and I should not have to justify my reasons to some stranger. People like her fail to realize that I do not love this for myself. It takes a great amount of confidence for me to park there when I never wanted to qualify for it in the first place. This woman has no idea how hard it is for me to have the strength and pride to go out and do things that bring so much anxiety.

    Let this serve as a reminder that we should not judge a book by its cover. We can never really know what a person is dealing with just by observing them for a short period of time. I mulled over the decision to even ask for a disability placard. The reason I need one was and still is a tough pill to swallow. If you feel like you need to rudely speak your opinions to somebody that you know nothing about, just don’t.

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    Perfect Cronic Illness analogy....

    This is awful 😖 Yes our health care system in the UK is reasonably good. But I still can't afford not to work to keep a roof over our childrens heads.Times are tough and with these increasing fuel prices we #TheMighty are going to be the ones hit the worst. #AnkylosingSpondylitis #EhlersDanlosSyndrome #MyalgicEncephalomyelitis #Fibromyalgia #Depression #Anxiety #InvisibleDisability


    I need a break.

    I’m tired of being upset. I’m tired of fighting for fairness. I’m tired of not giving up. I’m tired of crying. I’m tired of saying you don’t understand and I am so very very very tired of people who don’t even care to understand. #stress #Epilepsy #norespect #InvisibleDisability