What It's Like Being a Teenager With Chronic Pain

I have chronic pain. I’ve had chronic pain for four years.

I’m 16.

I know the concept of disability and chronic illness makes people uncomfortable, but it’s important to talk about. The fact that it makes people uncomfortable is all the more reason it should be talked about. Disability should not be a taboo topic.

My entire life has changed since I got sick.

I am mostly housebound. Right now, I think it’s been three months since I left the house. And that’s just normal life for me.

There are some huge misconceptions about chronic pain, and even more so when you are young. This is my experience so far.

It’s not just pain

Currently I have chronic intractable migraines, a crap ton of mental health issues, and some undiagnosed joint pain.
So yeah, I’m in a fair amount of pain every day (which sucks) but it’s not just pain.

It’s being completely exhausted no matter how much I sleep.

It’s being nauseous and having no appetite all the time so I have to force myself to eat.

It’s spending most of my day in a completely dark and silent room because all lights, sounds, and even smells hurt.

It’s not being able to think straight because of brain fog.

And on top of all of that, there’s the pain.

No one believes you

Seriously. People will make up the wildest bullshit just so they don’t have to believe that I’m sick. I got chronic migraines when I was 13. According to most people, I obviously was a hormonal depressed teenager who was skipping school every day to lay in a dark room for fun. Every teenager’s dream. It was easier for everyone to convince themselves that I was lying than to actually listen and help me.

But, and this is shocking, I was a sick kid.

The people who were supposed to help me (i.e. doctors, teachers, and literally every adult who had authority over me) decided I wasn’t trying hard enough and it was my fault I couldn’t go to school. Even now, I still deal with people not taking me seriously and downplaying my symptoms.

I am not too young to be in pain. Disability does not have an age limit.

No one accommodates you

Because I’m “not sick,” no one accommodates me.

I’m talking about accommodations like turning the lights low, or using headphones instead of speakers, but for most people, the minor inconvenience is way more important than the several days in a pitch-black room it will take me to recover. Any accommodation I ask for is seen as annoying and totally not doable, when really it is, they just don’t want to.

This also ties into people refusing to believe me. If they are 100 percent sure I’m fine and I just want attention, they don’t have to help me.

I had to leave brick-and-mortar school because they refused to accommodate me, and now I may end up leaving online school because of the same thing.

I had to fight through every step to get accommodations, and they are still ignored most of the time.

You don’t get to be “a normal teen”

I had to leave regular school.

When I couldn’t hang out all the time my friends left.

I haven’t been able to get my driver’s license or get my first job.

I can’t go to prom, or to any sports games, or on any class trips.

A lot of teens complain about school, but I would give anything to be able to go. I spend every day at home because I am too sick, and in too much pain, to leave.

It is not a fun vacation to be disabled.

The future is terrifying

I am terrified of the future. And not in a “oh my god what college am I going to go to” way.

I’m too sick to go to college.

I might not even graduate from high school. I genuinely do not know if I can do it.

I can’t get my driver’s license.

I physically can not work a 9-5.

Everything I thought I was going to do when I was a kid is impossible now. I don’t know what I’m going to do.

Not knowing if I’m going to be able to be independent is one of the worst parts of being disabled for me.

Starting the conversation around disability is important. I have been consistently disbelieved and under-accommodated, and I know my experiences are not unique.