dealing-with-disability

[dealing-with-disability]

sometimes being disabled is like "this world wasn't made for people like me, but that's ok. i will create my own happiness and find communities full of people who understand me and share my struggles. i will rise above the inherent ableism of the society that i live in and i will find ways to be free and happy and alive" and other times it's "ouch eek oof agh my bones"

[dealing-with-disability]

I feel like we don’t talk enough about how having chronic illness and/or chronic pain makes you irritable. It makes you grumpy. It can make you a not very fun person to be around. 

We don’t talk enough about the ugly sides of chronic illness/pain. The parts where you feel like a bad person not because of the pain in of itself but because everyone else thinks you are pushing them away. The times when you don’t bear it like a saint and the roughest edges of your personality come out. Where maybe you do hurt other people’s feelings. Its a complicated side of the experience thats resists an easy answer. 

[dealing-with-disability]

When you have fibromyalgia so you think a particular area of pain isn't worth mentioning even though it's getting worse, and then you finally get it checked and it turns out your tendons were repeatedly snapping out of place and you've just been carrying on with your daily grind pushing through the excruciating pain thinking it's just how things are for you and wondering why you're such a whiney baby

[dealing-with-disability]

Hello, yes, I'd like to be extremely clear right now, it's entirely possible to be traumatized from being in hospitals, being sick, having procedures and surgeries, and every and all other single terrifying or humiliating thing/things that happened to you as a result of being disabled and/or sick.

It's possible, it's probably even more common than people think because it's not talked about that much.

Your trauma is real even if it's not something that's talked about that often.

[dealing-with-disability]

disability advocacy went wrong when it became about inspiration porn and “differently abled” and savants. its incredible that that guy with no legs did a triathlon but your sister with no legs will not and she doesnt need prosthetics or five hour training days to deserve respect and compassion and accommodations. its incredible that that autistic guy can look at a city from a helicopter for an hour and then draw the entire detailed skyline from memory when he lands but your autistic friend cannot and they dont need to have a special Autism Power to deserve respect and compassion and accommodations. 

activism framed around “we are just as CAPABLE” means that when people genuinely are less capable they are left behind. activism framed around “we are just as WORTHY” is fundamental to radical compassion.

[dealing-with-disability]

When the doctor’s plan is to “wait and see” for another six months...

[dealing-with-disability]

I’ve been thinking about how much trauma comes with chronic illness

Typically, medical trauma is associated with things such as accidents and serious complications that aren’t chronic. But I think being chronically ill traumatizes us so much more than we think it does. It doesn’t typically feel like trauma, as we most of us have forgotten what it’s like not to suffer. 

We often struggle with 

Invalidation from those around us, doctors, and over time ourselves. This makes us feel crazy and like we aren’t doing enough when we’re trying our best. 

Being denied medication, experiencing side effects from various medications, and severe withdrawals when needing to change medications.

Feeling pressured to overwork ourselves to survive in a society not made with us in mind.

Lack of accessibility.

Complications with insurance and constant phone calls, waiting anxiously for them to be returned. 

Judgement, even from strangers. They may think you don’t look sick enough, or you may get stares or see them trying not to look at you. Your self esteem may be affected if you can’t be looked at as just another person. 

Being let down. It is not uncommon to get your hopes up for treatment options or an appointment, only to be let down in some way or another.

The pain in itself, fatigue, and other symptoms. Being in a perpetual state of discomfort. Getting used to it doesn’t mean that it’s easy to cope with.

Acceptance that you may be, or will be like this forever as you watch others live normal lives and do normal things. 

Isolation and loneliness, and feeling incompatible with society. Humans aren’t solitary by nature, and it will always affect our mental states when alone for too long. Introverted or not, lack of interaction or relatability is damaging over time.

A much higher likelihood of abuse.

Learning details of your illness that are difficult to cope with. This can include mortality rates, low recovery rates, degeneration, lowered life expectancy, heightened risk for further complications, etcetera.

Mourning the life we could have had. It’s said that this is legitimate grief. Denial of your illness(es), anger towards the world, mistreatment from society, or the unfairness of your situation, bargaining and trying everything to cure yourself or try remedy after remedy, depression, and hopefully acceptance eventually. 

Additionally, having to give up any aspirations, goals, or plans you may have had before you were sick/disabled. If you aspired to do something you love like dancing and have to give that up and settle for something you may not genuinely enjoy or no career at all, that’s difficult. You feel like you’ll never amount to anything and are a burden.

Self blame and guilt. Shame that we may need to be dependent on others. Wanting to be our own people but not being able to because we can’t do everything alone.

Hospital visits.

Knowing that there are eugenicists that wholeheartedly believe that your life has no value (it does). 

The stress of awaiting test results. Negative ones making us anxious, and positive ones possibly being heartbreaking too. 

Testing in itself, often uncomfortable, scary, and nerve wracking. 

Being infantilized and treated like babies. Sometimes baby talked to, patronized, or clearly not seen with mutual respect as an adult (or teen).

Others feeling that they know your body or needs better than you do. 

Fearing the worst during flu season and of course, a serious pandemic. Namely if your immune system is compromised. 

That isn’t everything, and you are free to add to the list. 

Don’t be so hard on yourself. Even if you aren’t trying your best right now, I’m proud of you. Don’t minimize the trauma that you deal with on a daily basis. You’re doing great. 

[dealing-with-disability]

pls answer this!

how do you guys store all of your medication supplies?

[dealing-with-disability]

me today. and on other days where i’m worse, i would need a long rest after EATING BREAKFAST

Meirl

[dealing-with-disability]

nothing like a pandemic to remind you that the ableds just don’t fucking care about u

[dealing-with-disability]

[dealing-with-disability]

“Josipa” pt 2. | Chronic pain

[ID: Illustration of a girl with pale skin and bags under her dark brown eyes. She has brown short hair with bangs and hands in front of her mouth. Her rib cage is showing and is filled with flowers and plants, with some plants coming out of it. She’s covered in bandages and plants.]

[dealing-with-disability]

[dealing-with-disability]

Ableds are so attached to their definition of disability as “for the old and feeble” that they can’t change it even when they meet young/competent disabled people.

[dealing-with-disability]

I figured out what’s making me so sad about my pain today.

It’s a Saturday, and for everyone else, that means it’s a weekend. An anticipated and welcome break. Time off from the work/school week’s obligations, and time to relax and do fun things. 

But for me, it’s just another bad pain day.  Nothing special or relieving about it. 

[dealing-with-disability]

Look I clown veganism often enough but really, truly, don’t ever fucking feed somebody something without their knowledge or consent. It’s hugely fucked up and not OK.

[dealing-with-disability]

I’d like to talk about unsolicited medical advice, i.e. why you shouldn’t offer it. I’ve mentioned this before but I think this one deserves a long post of its own for those of you who care but just don’t know how to show the chronically ill people in your lives that you care. First, I want to start by saying that we KNOW that it’s coming from a good place: you hate seeing us in pain and want to be helpful. Yup, got it. Now, let me tell you how it ACTUALLY makes us feel.

a) It makes us feel anxious. Most of us are already spending 90% of our energy just maintaining whatever level of “health” we have. We take drugs, we get treatments, we have a gagillion doctor’s appointments, we take supplements, we maintain certain diets, we maintain a work-our regiment (if we can), etc. The first thing that happens when you come at us with “Hey, have you tried ___???” is that it sounds like just one more thing for us to do and we don’t have the energy to be dealing with that right now.

b) It makes us feel insulted and angry. This is because it sounds like you don’t trust us to be able to manage our own health and make our own decisions about our body autonomy.

c) It makes us feel guilty, like you’re blaming us for somehow not working hard enough for our own health.

d) And it makes us feel really alone because you aren’t exhibiting enough empathy to be aware of any of this.

So, if you’d like to be supportive of the chronically ill people in your lives, may I suggest that you direct your energies to either donating to or volunteering for organizations that do specific work in the fields of our illness (like the Ehlers Danlos Foundation, which I pick entirely randomly - haha). Or perhaps just ask them “How can I help you?” Most of the time, just knowing that you’re there is enough. Thank you for coming to my TED talk and I love you.