My “Normal”
Recently, I thought I had the world at my fingertips.
I was ready to move and overjoyed with opportunities. I should’ve known that it was too good to be true.
Honestly, I don’t see myself ever getting healthy. I see my conditions getting worse as I age. This isn’t me being pessimistic; this is me being realistic.
So many people tell me that I will “get better.” All I have to say is they don’t understand my chronic illnesses if you come to that conclusion. Just because I’m young doesn’t mean I’ll be “fine and healthy.”
A few months ago, I thought I could actually be a normal young adult. I graduated college, completed radiation and got cleared by my doctors.
“Your scan came back negative,” a nurse told me on the phone in June. I was at my coffee shop in Auburn, applying to countless jobs all over the country. I felt free for just a second— not a single disability was holding me back.
I was optimistic, excited and ready to make a name for myself outside of Alabama. I felt my future flash before my eyes, and it was everything I wanted.
Little did I know, on my first day of work, I would find a swollen lymph node in my neck just 15 minutes before my first training session. I was terrified.
It still hasn’t gone down, and all of my doctors are concerned because of my history.
On the other hand, I’m emotionless. Nothing feels real about my body anymore. There’s always something wrong. I’m not shocked or scared at this point.
I was supposed to move to Virginia at the end of August. But it’s almost October, and I’m still in the South. With my track record, I should’ve known this life transition couldn’t be that simple.
I never get the luxury of happiness and new beginnings. Everything is shaded with fear of a chronic flare-up, cancer scare or dislocation. I’m not “healthy.”
I guess this has just been a confusing time for me. Everyone around me is able to move on from college and begin their new grown-up lives, but I can’t.
Who can’t regularly work 40 hours at the age of 22? Who got a permanent disability placard at the age of 18? Oh yeah, me. That’s who.
I’m just frustrated at society. I feel guilty for not being able to work, and I fear my own boss thinks I’m faking my sickness to get out of writing stories. I know she doesn’t think that— trust me, she’s amazing— but the little voice in my head says I’m a fake.
This very voice didn’t come out of nowhere. It’s been forming ever since I was born.
Being a young, disabled person is exhausting. I look normal, but I’m far from it. And because I don’t look the part, people don’t believe my disabilities. Sometimes doctors don’t even believe me.
I don’t want y’all to think this is a pity party; I don’t want any apologies or sympathy. I’m just at my limit. I was stripped of being young and carefree. It’s robbed so many life experiences from me, and it hurts.
Going to college, I couldn’t even go to football games or bars. It would be too hot and too much walking. If I went, I was at the risk of passing out. If I decided to risk it, I wouldn’t be able to leave my bed for days or weeks at a time.
Don’t even get me started on the pandemic. I was terrified to even go to class with how careless so many students were.
If an able-bodied person caught it, they were most likely going to be okay. If I got it, I had the risk of hospitalization and death. I was so scared to go anywhere, and so many disregarded this. They continued to go to class sick and not wear their mask.
I couldn’t even get accommodations to have a class virtually. If it was in person, I had to be there even though I was high risk. The only time it could switch is if I asked my professor, and they could still say no. Tell me how that’s okay?
In high school, I missed so much due to surgeries and illness. The only difference is that I wasn’t diagnosed with Ehlers-Danlos Syndrome yet, and because of that, many people thought I was faking it.
Ableism is something I deal with externally every single day. It’s even rooted in my own thoughts.
“Okay Abbey, are you actually feeling this bad or are you exaggerating for attention,” I’d think to myself. “No one can be this sick all the time; it’s embarrassing. Do you want people to feel sorry for you?”
I’m having those thoughts even now, and I’m so mad that I have to fight my own conscience.
Why didn’t any of my doctors listen to me as a kid? Why did it take until I was a senior in high school for my first chronic condition to be identified? Why did no one help me? Why?
I knew I wasn’t normal from the moment I was a little kid. In the fourth grade, I started getting injured constantly. I was in a boot or cast at least once a year; so many people laughed and made jokes about it.
“Oh gosh, Abbey, we should just cover you in bubble wrap. You are so accident prone,” I would hear from almost every teacher. I just uncomfortably laughed to stop the interaction.
In the sixth grade, we would go to an open field behind our building to play soccer. Every time I played, I knew not to get close to people kicking the ball. Every time I did, my knee dislocated.
From that point, I would hang in the back and just kick the ball really hard as “defense.” It actually worked. I started getting picked first because people saw how far I could send the ball. Little did they know, I did that so my knees wouldn’t dislocate.
I started experiencing severe knee dislocations regularly by the time I was 10. It was a nightmare.
I remember asking my orthopedic doctor if it was normal for my knees to dislocate constantly. You know what he said? That it was a part of growing and every kid experiences that. I was confused but went along with it.
How is it normal for a 10-year-old to dislocate something every time someone touched her? Was it normal for someone’s knees to pop out if they fell in an ice-skating ring? What about when she’s at her prom? Does every kid’s knee dislocate when they’re dancing?
You know what the real answer is? No. None of it is “normal,” but it’s my normal.
I’ll never forget my pediatrician telling my mother that if she was my mom, she’d need a few drinks. I was a fifth grader, and no one was seriously questioning why I missed so many months of school.
Medical trauma is real, and it’s a serious problem. Not being “normal” shouldn’t mean I should hurt constantly. It doesn’t mean I’m faking symptoms if my tests come back okay.
I spent my entire childhood and teenage years being told by doctors that nothing was wrong with me. My mom and I were the only people fighting for my health, and that’s traumatizing in itself.
I’m sick of having to explain my disabilities to doctors because they don’t know what it is. How is it that I’m educating doctors about my problems when I go to them for help?
What I want you, my reader, to know is that your body is a gift many don’t have.
When you complain about going to work or class, remember that some people can’t even do that regularly. On bad days, the only place a chronically ill person can go to is their bed.
Sometimes, they can’t leave their house for months at a time. Besides going to doctor appointments, I haven’t left mine in over a month. I don’t want to be confined to my house, but it’s not safe for me to go out.
I guess I’m coming out of my blog hiatus with this post to explain how rooted ableism is in our everyday lives. There are many things healthy people take for granted. Just being able to work consistently without health scares is a strength.
It’s a privilege to be able to leave your house without worrying about getting sick or injured. It’s a privilege doctors know how to treat you and that you never had to experience medical self-doubt. It’s a blessing that your joints stay in place and don’t pop out on a whim.
I’m not saying this to make anyone feel bad, but it’s true. It’s something that’s not talked about enough, and it needs to be.
A flawless transition into adulthood is not something everyone gets. I always have to worry about doctors, medication, treatments and never-ending symptoms. I never get a break, and when I try to relax, life slaps me right back into reality.
Don’t pity those with disabilities. We don’t want to be looked at like a sad, little puppy. Just recognize our struggles and understand that our lives are furiously chaotic. We can’t make chronic illness go away. A simple workout or juice cleanse isn’t going to cure our bodies. All we can do is hold on to get through flare-ups and complications.
So, everyone out there that has read this far, know that many “normal” people have physical struggles. Just because someone looks healthy doesn’t mean they are. Being disabled isn’t some quirky lifestyle; it’s a never-ending battle against yourself.
This continuous war is something I’m not ready to lose … not yet.
Sincerely, Abbey