Living With Chronic Pain Blog
Of course, there were people who just wanted to comment about my cane, and now that I look more disabled. I had a few of the “what happened” comments. But actually, as I started to give people the benefit of the doubt and tell them at least just a hint of my story, there were more people who revealed themselves back to me. I found more people with invisible disabilities and illnesses than I knew about. My own internalized ableism was shocked, because of course I assumed that the people who I thought were able-bodied were not. But this is what my journey is about. This is what I’m creating all of my art about in school and sticking up for those people who can’t voice it to the public themselves. This was a great experience, and I want to embrace those comments about my cane more now. My cane is almost starting to feel like a safe space. A way to reveal my own disability as well as allow others to reveal things about themselves that they don’t necessarily shout from the rooftops.
In light of recent events, I am wanting to share with specific issues I’ve had to deal with. Some of them were worth more serious legal action, and others just blatant ignorance. But often with invisibly ill people, the ableism is a lot more nuanced. It can be very subtle, often passing over my head due to my own internalized ableism. I feel worthy of the negative feedback. I feel worthy of the stares and disgusted looks because disability makes people feel undesirable.
The biggest issue I’ve been dealing with started when I was hit with a car walking on my university campus one day about three years ago. I was hit with a campus car, as well. I was knocked completely to the ground, hips first causing a big flare of pain in my spine ever since I was hit. I had physical therapy right after the accident, but still had the flare of pain. I’ve gone back to physical therapy since then, and my back is as good as it has been in a long time, but the flare of pain has not completely gone, and I don’t think it will be completely gone ever again. Unfortunately, the school didn’t do anything to help or compensate for what happened. The President of the school would not meet with me, and instead I had to talk to the Dean of Students. He wasn’t there to talk about what happened or help the situation, he just was there to say sorry and ask me about my specific health concerns out of his own curiosity and nosiness. The only action ever made by the school was to sit down all the drivers and tell them to drive more carefully through the campus. I’m glad this happened, but it was not enough. Not for me, nor the safety of the school. No one could see I was hurting on the inside, and no one really cared to fix what happened to me.
Another recent run-in with ableism: complete absence of disability parking spaces at my apartment complex. I confronted them with this issue, they said they never had anyone ask them before. The landlord kept insisting that they never had anyone need that, and I could move. I had just moved in already, and didn’t think my complex would have literally no parking for disabled persons, let alone refuse to offer accommodation for it. I have officially requested a spot for myself, especially because the lot fills up all the time, and apparently if you can’t park there, there’s an overflow lot even further away. I have kept insisting it happen, and I’ve just been waiting. It still has not been put in for me yet. I needed it before school starts, and school is starting in two days. Still. Not. Ready. I don’t know why it’s so hard for them to put a stake in the ground with a sign, that should have been there in the first place. It’s not supposed to be an option. It’s a law. They should probably have had four spaces already for the size of the place.
Other blatant comments and acts toward me:
1. “What did you do to yourself?”
2. “How did you hurt yourself?”
3. “No wonder you haven’t gotten up…” After I didn’t stand up when they walked in.
4. Many stares, almost every person I pass.
5. Dramatically backing up in a bar when finally sees my cane.
I am a 21-year-old cis-gender female living with chronic pain. My illness has never been very black and white. It’s often based on my own perception and feeling at any given time. I first started to feel it in 2012, but I am just now revealing this side of me publicly. It’s been a long 7 years.
I am here to write to you that people living with invisible disability are real. I am here to bring up conversation around invisible disability and the challenges that I and many others like me face.
An experience I’d like to talk about is having people around you literally look at you differently. I got the chance to study abroad in Italy. This place is super hilly with lots of stairs which are hard on my chronic illnesses. I didn’t speak up at the time—I stuck it out because of the opportunity and traveled as much as possible. I pushed myself so much that I physically had to sit in a wheelchair and take a rest. I could not walk anymore I hurt so much. Thankfully at this point we were in a museum, which they had a few wheelchairs available. This was really great and unexpected with how inaccessible everything else is in Italy. I had a break down of tears due to the pain, and my classmates were already concerned. I caught up with them after getting a wheelchair and every single person in the class had their eyes on me, including my teacher. She could speak through a microphone that connected to many different earplugs to listen to her talk about the art. She said aloud for everyone to hear: “What did you do to yourself?” Another girl in my class asked, “did you sprain your ankle?” I felt like I was on display for everyone, showing the side of me that is socially looked at as unattractive, weird, undesirable. I answered as nicely as I could, but I didn’t feel like I had to tell anyone anything. Most people didn’t ask and were super nice and treated me the same. It just felt so violating of who I was before, and what people perceived me as. And, the craziest thing was this happened when I was abroad, so the friends I was building as school and working hard on for a long time didn’t see this side of me, it was still hidden. I would have to go through this awful situation of revealing a very vulnerable side of me again.
I was tired of feeling ashamed of it and hiding a part of who I was—a very large part that touched many aspects of my life. There were people in my life who were tired of hearing about it. They didn’t want to hear me “complain” anymore, when I was barely even scratching the surface as far as revealing myself. This relationship as well as how people were reacting to seeing me as disabled has completely motivated my inner activist to come out as disabled. I’m tired of hiding. I’m tired of relationships ending because of my illnesses that I have no control over. I’m here to own who I am. And, who I am is a strong, daily fighter of many chronic illnesses.