CN: brief mention of getting sick
I have never hesitated to talk about the abusive home that I grew up in, but there are so many parts of growing up in that household that I haven’t touched upon in my writings.
That’s probably because there are so many egregious things that happened that some of the “smaller” things – which are actually not that small – have fallen by the wayside to make way for larger stories of oppression, violence, and mistreatment.
One of those things that I have not touched upon, but which I feel is important, particularly as I’ve seen it happen to others, is not being believed by my family. This is particularly true in relation to not being believed about my health.
I remember learning when I was young about the story of the boy who cried wolf.
“If you cry wolf, nobody will ever believe you so just don’t do it,” my mother would tell me.
I hated that story because people would always tell it to me as though I was going to be the one to not tell the truth. I don’t know what it was about me in particular, but I resented the implication that I was going to be the liar in my family.
So much so that when I was very little I became the unintended narc not wanting to not be believed for telling tall tales.
Let’s just say the time that I told about my brother calling me a “bitch” and me getting punished with soap and not him, for telling the word to my mother when she asked me what word he said, is responsible for me tattling a whole lot less on everyone. It’s no fun getting punished for others.
That was also the moment when I learned I could not trust my own mother at her word, as she told me I would not get in trouble for telling her what word he said, and immediately changed her tune when she shoved a bar of Irish Spring in my mouth.
My parents could lie, but we were held to a higher standard than them.
I find it ironic that people that could lie to me so easily, would not believe I was ever telling the truth about anything relating to my body. I guess perhaps when you are a liar yourself, you assume everybody else is lying as well, but all this did was cause me and my body harm.
The hardest thing to endure was them believing I was lying about my health. And it wasn’t just relegated to my health concerning my disabilities. I can usually say stuff like this was ableism exclusively, but I wasn’t often believed when I did not feel good because of general illnesses, as well.
Take for example, the time I was 10 or 11 years old, in the early 90s. I remember this day incredibly well. I was the Northwest Ohio poster child for the Muscular Dystrophy Association and I was supposed to go to an event at a regional grocery chain. I believe it was a Farmer Jacks or Cub’s.
The Farmer Jacks or Cub’s was across town and it was a very hot summer day. The event was in the parking lot and I would be outside all day long. This was work for me.
From the beginning of the day I did not feel well. I felt like I was coming down with something and I felt just off. I told my mother I didn’t feel good and she immediately dismissed it as me not wanting to go to the event.
I have a neuromuscular disability that affects a lot of different systems in my body. The disability is called spinal muscular atrophy and it’s a neurological condition that affects the nerve endings that control muscle movement. It also seems to mess with what regulates my temperature making me increasingly sensitive towards both heat and cold. I can handle neither well.
The parking lot was hot from the get-go, and as a child I started whining quite quickly about how horrible I felt. To be truthful I probably did feel quite horrible considering how hot it was outside and how dysregulated my temperature was probably getting as a result. But I also had felt sick from the beginning of the day, and I relayed that info to my mother more than once, letting them know that I was not comfortable and ill.
I continued to be told I was being dramatic, to shut up, and given the look of you’re embarrassing us publicly whenever I brought up how horrible I felt.
The event was to sell root beer floats. As people shopped at the grocery store we stopped them on their way out and asked if they wanted to buy a root beer float to support the Muscular Dystrophy Association. Let’s not even get into the fact that they had young kids with MD out doing these kinds of things at such events in the heat. That’s a story for another day.
Even despite being sick I tried really hard to get people to buy root beer floats, and some people did. We were making money, but I was absolutely miserable and getting worse by the second. Eventually I was crying and complaining so much that my mother went into the store and called my grandfather.
The store was in West Toledo, and my grandparents lived in West Toledo. It only took my grandfather about 15 minutes to come get me. When he arrived, my mother, still not believing me, told him I was not allowed to watch television or do anything fun at his house. I had to lay in bed because I was “sick.”
Jokes on her. I really was sick. I’m not usually one to lay around even when sick but I was so ill from being out in the sun for so long when I was ill with some kind of virus and so exhausted that I went straight into his house, got in bed and passed out until my mother arrived a few hours later to take me home.
My mother and brother were both shocked that I was asleep when they got there. None of them had believed I was sick except my grandparents who took care of me while I was.
The 20 minute ride home was uneventful until we got to the stoplight on the corner right next to my house. With a sudden urge to be sick I begged my mother to stop the car and let me open the door.
Once again I was not believed, as I was told, the driveway is right there. In the one minute it took to pull into the driveway well let’s just say the backseat of our car was never the same again.
My mother, horrified, had my brother lift me out of the car and carry me into the house into the bathroom. It was too late because I suddenly felt better after that. I went to my room and laid down and did not get sick again.
The assumption that I would cry wolf prevented me from getting the help I needed from my family especially when I needed it the most.
While this is just one example of not being believed, the lack of belief about what was happening to me medically was so common by my family. Extending into my disability, my mother’s favorite line was, “she’s so dramatic!” about everything I did and experienced. It’s still her favorite explanation for why she believes I act the way I do.
She has used it to explain why I’ve been upset or cried during the following medical events:
– Having her grab me by my leg which was recently fractured and pulling on it hard to try and pull me out of my wheelchair
– collapsing backward on concrete so my head reverberated as it smacked against the pavement
– twisting my ankle and collapsing on the floor on top of it
These are the kinds of things that are deemed as dramatic. In the event of me falling backward it was even questioned whether I fell on purpose or not! This, when I have a neuromuscular disability that literally causes frequent falling and lack of balance when people with it are able to walk.
Throughout much of my childhood, my grandfather was one of the only people that usually believed me and he proved time and time again that he would have my back.
The rest of my family often left me to my devices, believing I was dramatic, and just wanted to cause trouble for the family when all I was just trying to do was survive.
This is a common narrative for disabled people – our parents do not believe us about anything medical. They believe we are dramatic. They believe we are too over-the-top. They believe we don’t really experience the level of pain or sickness we do.
At the end of the day, believe people. Believe us when we say we are sick. Believe us when we say we need something relating to being ill or dealing with our disabilities. Believe us when we say we need treatment and accommodation. We deserve nothing less.
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