I was not born with a disability, mine was acquired. It gives a different experience of disability in that it is not something that has always been there. I have known a life where I was 'abled'. I think for some of us in that space, internalised ableism is a real issue.
I can say with hand on heart that I have said or thought all of the things on these squares. Let's go through them, top to bottom left to right.
Okay, but what if I am faking it?
Having had the unfortunate experience of being told my symptoms were psychosomatic over the course of 8 years, in spite of evidence to the contrary, I began to ask this question of myself daily. At times I thought I may have completely lost my mind and be causing myself to experience the horrific things I was going through. That somehow I was creating it.
New symptoms, not going to the doctors
When you have 'complex' healthcare needs it can be depressing spending so much time in and out of doctors surgeries and hospitals. I had a heart rate of 170+ while waiting for the bus one morning. I had chest pain which continued for 5-6 hours, I was pale and clammy, my vision was affected and I felt nauseated. Instead of going to the doctor or the hospital, I rode it out. The next time I saw my doctor I asked at what point I 'should' call an ambulance.
Doing the thing and having to recover for days
I run out of mental energy quickly. A day filled with many hours of travel, high stress and activity will cost me physically, mentally and on occasion emotionally. I have had to spend days at home on the couch doing very little to recover from that one day.
Not letting my illness stop me
As above. I know the things will cost me but I still do them. Earning my degree was a long, hard road and I often hit the wall but I did not let anything stop me.
Not asking for help
This is a big thing that has taken me years to get over. I really suck at asking for help but I am getting better at it. My University has been exceptionally good with this. I have asked for help and they have supported me in every possible way including providing a beanbag so I can nap!
"Other people have it worse"
They do. There are many other people who have it worse. It took me a while to come to the realisation that we all have our own 'thing' and that none of them is any easier than the others.
Not wanting to be an inconvenience
When I was living with my brain tumour I was isolated largely because I was not physically able to participate in life. Even now, I feel uncomfortable when I have to ask for large font handouts.
"Oh, I am fine!" *is in agony*
This has caused my husband to compile a rating system of my 'tells' when it comes to pain. It goes something like this -
6 Clenching my teeth
7 Jigging my foot
8 Tears/Laughter
9 Being very quiet
10 Losing consciousness
We have no rating under 6 because I am pretty good at staying on top of pain at five and below.
"This is totally normal"
I have a deep-seated discomfort around being a patient, ambulances and hospitals. I have been known to take myself quietly home after a seizure and blow it off because I didn't want people to worry.
"I'm just trying to get sympathy"
I hate being the centre of attention so this is something that people have said to me rather than something I have thought of myself.
Not wanting to say you are 'disabled'
13 months after brain surgery I went back to study to see if I could remember anything long enough to be assessed and to make sure my admin skills hadn't vanished. I actively rebelled against registering with disability services because I did not see myself as 'disabled'
"I'm taking this from someone who REALLY needs it"
This is something that any paramedic or ER staff member who has encountered me in their workplace has heard me say.
Not taking simple precautions
Since C-19 hit I have gotten over this one.
"Today is just a day off"
Imagine being in an unfamiliar city, alone, for a number of back to back conferences and having to take a day out of one of the conferences to just lay in bed for the day because you do not have the mental fortitude to get up, get dressed or even eat for that matter.
"I'm sure it is nothing"
Went to the Doctor to have a repeat prescription written (I hadn't been well enough to catch the bus the day before), ended up on oxygen being taken by ambulance to the hospital with pneumonia caused by mycoplasma which ended up hanging around for 7 months!
Smiling through the pain for other peoples sakes
I cared for my parents all the way through to my Mothers' death while battling phenomenal pain from my brain tumour. After I had brain surgery I lied to my Dad and told him everything had gone really well so as not to worry him.
I am not defined by my lifechanging diagnosis
Literally, a poster girl for I am more than my disability!
Tries to push through the pain
See "Oh, I am fine!" *is in agony*
"Sure, I can do that"
I had to learn to say no.
Not mentioning something is bad for you
To avoid being an inconvenience (see Not wanting to be an inconvenience) I have eaten things I am not supposed to eat as a diabetic.
"I'm just lazy"
This often comes out when I am frustrated about not being able to do something. Negative self talk kicks in before acceptance that there are just things I cannot do.
Feeling guilty for feeling bad
My youngest son was 5 when I was diagnosed with my brain tumour and a teenager when I had surgery. For around 10 years of his life, I had been sick or recovering. I know it wasn't my fault or something I could control but there was a lot of guilt.
"I'm not REALLY disabled"
Most of my disabilities are not obvious to the naked eye so sometimes it feels like it doesn't 'count'.
"I'm just being dramatic"
Not something I say to myself but certainly something that has been said to me by people I know.
BINGO!
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