Invisible Disability

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Pain explaination? #ChronicIllnessEDS #Anxiety #InvisibleDisability

How do you explain pain ? I'm doing pt for my Si joints for a twisted and tilted pelvis and knees and everytime the therapist asks how I'm doing? I say okay more or less sore than last time. I'm not sure how to explain my pain . I've apparently been doing this all my life and in the last year discovered is not normal to feel like this. I am I downplaying how I feel and hurting myself.

She said something the other day about doing pretty good because Occipital pain she heard is supposed to be debilitating, It is and some days I dont function well but I can't just give up and suffer. I have to go to work and deal with the public. But as usual my brain is over thinking everything. I don't want to seem over dramatic because I look normal. I hide it pretty well. #hypermobileehlers-DanlosSyndrome(hEDS) #Anxiety #EhlersDanlosSyndrome

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Help with Invisible Disability Research!

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:

Thanks so much for your time and consideration! 😊

#ChronicIllness #ChronicPain #MentalHealth #InvisibleDisability

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😬Our ‘Public Persona’😬

This is exactly what I, and countless others, do everyday - we put up a ‘public persona’ to hide what we’re truly going through. We pretend that we aren’t: in #AGONY or #depressed or #exhausted or #anxious . We pretend because we are #scared of how others would treat us if they really know what we were going through. The thing is though, by pretending we are something we’re not, we are giving ourselves more #Stress but also denying someone the opportunity to help us deal with the things that are really going on in our lives.
#itsokaynottobeokay #itsoktoneedhelp #ChronicIllness #chronicillnessawareness #ChronicPain #chronicpainawareness #mentalhealthmatters #MentalHealth #MensMentalHealth #CollegeMentalHealth #MentalHealthAwareness #Disability #IntellectualDisability #DevelopmentalDisability #InvisibleDisability #disabilityawareness #invisibleillnessawareness #FunctionalNeurologicalDisorder #FND #FNDAwareness #JointHypermobilitySyndrome #ChronicMigraineSyndrome #ChronicVestibularMigraine #HemiplegicMigraine #Migraine #BipolarDepression #ChronicDepression #Depression #ChronicFatigue #Anxiety #SensoryProcessingDisorder #BrainFog #PanicAttacks #PanicDisorder #notalone #BeYourself

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Cancelling Work

Just cancelled my second shift this year.

I feel so terrible but I just can’t face the pain today, even knowing if I could bring myself to shower and get up, it would subside a little.

There are workers coming to my house today which is stressful because it’s awkward and I might be in their way if I stay in bed or watch tv on the couch but I’ve got nowhere else to go.

I really needed the money too and my boss will be so mad at me. She’s sick with her pregnancy right now and always had the attitude that people choose to be sick.

Sorry to vent, just feeling miserable and wishing for hugs. #InvisibleDisability #Fibromyalgia #Work #Depression

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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:

Registration: Gilman Webinar - Navigating Invisible Disabilities Abroad

Thank you for your interest in learning about opportunities for people with disabilities to study abroad with the support of the Benjamin A. Gilman International Scholarship Program. Please fill out the following information to register for the webinar. After you submit the form, you should receive information on how you can access the event. Be sure and check your spam folder if it does not appear in your inbox. Contact if you do not receive anything. This event is organized by Nicole Bette with the support of the National Clearinghouse on Disability and Exchange and will be held on Monday, January 30th 5:30-6:30 PM Eastern Time. It will be captioned and interpreted. Let us know if you need any other reasonable accommodation to participate.

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

44 reactions 7 comments
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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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