“You don’t look disabled.”

It’s a simple phrase, but a hurtful one nonetheless. It’s a dismissal of the painful life that I have to live. It invalidates my suffering, and yet it’s a comment that gets thrown at me every time I tell my story.

I was diagnosed with fibromyalgia over this past summer. It’s a condition I’ve lived with my entire life, but it took over a decade to receive a proper assessment. It is a brutal and relentless chronic illness, with no miracle cure and few treatment options.

I had been suffering from chronic pain ever since a young age. It worsened as I aged, starting with my shoulders before spreading everywhere else. I’ve also faced chronic fatigue since childhood, too. I spend my life in pure agony and permanent exhaustion.

Doctors never really knew what to do with me because to them, I looked fine. I was always a little chubby, but otherwise I was always fairly healthy. They would tell me, “You just need to lose some weight. Stay active, eat well, and you’ll feel better.” I would never end up feeling better.

In fact, my condition kept getting worse, but no one bothered to look at it any further. My pain was never taken seriously, because I was young and I looked fine.

When I entered adulthood, it was time to start looking for a job so I could move out of my parents’ house. I was dreading it because I knew it wouldn’t be easy for someone like me, but I had no other option.

From 2020 up until this past summer, I tried to hold down a job, but I failed every time. I was fired many times, and each time it was for the same reason: I am disabled.

Some employers were more subtle than others when it came to letting me go, but some were more blatant in retrospect. Back in August, I was fired from a food service position for allegedly stealing their products.

Most other companies have to be more careful in how they fire a worker with disabilities.

I worked for a health insurance company after I had finished an associate’s degree in medical billing and coding. I thought it would get me a nice office job or a work-from-home setup just doing data entry, and it did, but I developed carpal tunnel syndrome about four months in.

I already am prone to wrist inflammation, but I didn’t think a typing job would give me an injury I’d eventually have to get surgery for.

Yet no time was given to treat my injury. Instead, the blame was shifted on me for having a poor work performance. My boss said to me, “I just don’t think you’re trying hard enough.” I was eventually fired.

I lost all my jobs because of my health, regardless of what is written on paper. The same cycle was on repeat for five years: start a job, face health issues because of that job, lose that job.

I tried to apply for disability benefits, but due to the lack of documented medical treatment, I was rejected every time because I wasn’t being taken seriously enough by my doctors.

I felt like no one was listening. I felt like I was screaming into a void with no one to hear me. Luckily, I would find just one primary care doctor who would finally kickstart my case.

In 2023, I finally stood up for myself and demanded proper care. Living in a new area meant I had to get a new doctor anyway, and I told him everything up front.

I had to learn to advocate for myself and get doctors to advocate for me, because at that point no one else was going to do it. I was referred to several specialists during the process and was finally receiving all the tests and imaging that no one thought to do many years ago.

Nothing showed up. My blood is healthy, my bones are strong, and my muscles look fine. Finally, a rheumatologist told me, “I’m going to screen you for fibromyalgia.”

There is no actual test for fibromyalgia, actually, it’s just a matter of ruling out other disorders. I was initially told it could be lupus, but the blood tests indicated that I don’t have an autoimmune disorder.

For fibromyalgia, the doctor does a physical exam of several key tender points that hurt to touch. All of my points were indeed tender and very painful.

Fibromyalgia isn’t the only lifelong disorder I am going to struggle with, though. I also unfortunately suffer from complex PTSD, which is a form that is caused by long-term and repeated events of trauma.

I was also diagnosed with major depressive disorder with psychotic features, borderline personality disorder and a dissociative disorder. I am also on track to be receiving an autism diagnosis as well, but my social worker has expressed a fear of it due to our current presidential administration’s stance on the topic of autism.

I have only been struggling with employment because I am disabled and unable to work, but I have to emphasize what I wrote earlier. It is my only option.

Unfortunately, if I am unable to hold down a job and am being rejected from the only system in place to assist those who are unable to work, there is no other way that I can afford to live.

I can’t afford housing. I was able to have an apartment back in 2022 when I was working, with rent somewhat more affordable than it is now. I then became increasingly unable to work as my conditions kept getting worse because of said work and the strain it puts on my body and mind.

I then had to move back in with my parents, and unfortunately, my living situation became traumatic. I now have fresh trauma, on top of my childhood trauma, from witnessing domestic abuse for so long. I still live in that house, and my health continues to deteriorate because of it.

All of this could’ve been prevented if resources existed for those with disabilities — and the poor.

Even if it were easier to receive disability benefits, it is still designed to keep us in deep poverty. I am aware that, even if a miracle happens and I am approved, the monthly pay barely reaches $2,000.

Disabled people on benefits are also not allowed to have a certain amount in total assets, making it impossible to set aside or save money.

I am also on nearly every public housing and income-restricted apartment waiting list in Allegheny County. I am trapped. I can’t work enough to make enough money to have a place to live. I can barely handle my work-study right now, and it’s only eight hours a week.

Society’s perception of those with disabilities also plays a role in our discrimination at large.

Every day I see comments and posts on social media about how people see us as lazy, entitled, useless and unworthy of life.

Ableism is deeply rooted in our everyday lives, and people who aren’t disabled don’t realize this.

I have to accept that I live in a country that wants people like me dead and gone. I rely on SNAP, as well, in order to stay fed, which is under attack and always at risk. I have been made to feel that I don’t deserve to live because I have an illness that prevents me from working.

I’ve been told that I need to stop asking for handouts. I’ve been told that I’m a waste of taxpayer money. I’ve been told that I’m not really disabled in the first place because I don’t “look disabled,” but what does it mean to “look disabled,” anyway?

My existence is a political debate, one that ultimately ends with a grim conclusion.

I don’t know what the future holds for someone like me. I can only hope that one day, I will have a peaceful little apartment and enough food to eat so that I can finally work on healing my soul from all these years of traumatic pain.

I may not look disabled, but I am. I am disabled, poor, and I face a battle just to exist every single day. I live a life in survival mode. I do not remember the last time I felt that I could relax, rest and recover.

One day, I hope to live in a world that sees disabled people as valuable. I want to be seen as human.

I’m tired of fighting for the right to exist, and not only that but the right to thrive as well. I shouldn’t be restricted to the bare minimum needed to survive.

I deserve to live comfortably, and I deserve the same rights that everyone else has. I’m tired of being held down in poverty with no chance to escape — all because I was born with an illness that no one else can see.

But I’m ready to be seen now. I want my story known, and most importantly, I want people to know that they are not alone.