updated: 2025-11-17
I am officially diagnosed with enthesitis-related arthritis. This means my ligaments get inflamed and cause joint pain. If it's unmanaged, it could cause my joints to fuse. Thankfully, I am now taking medication, specifically Humira, which treats it quite well. In my current life, I don't experience much joint pain. However, in the first several years of having arthritis, it was not treated adequately, and it greatly shaped how I view the world.
When I was in 8th grade, I was in track and field. Joint pain started very suddenly, manifesting as slight hip pain when I ran.
I thought it would go away within a couple of days, but it never did. It only got worse, affecting me when I walked, and spreading to other joints.
The tricky part was trying to talk to my classmates about such pain. One common response I received was, "Oh, I have some pain sometimes, but usually it goes away!", but the same didn't happen for me.
I told my parents I had some pain going on, but it didn't seem severe enough that my parents would be alarmed. I didn't talk about my pain for several months, and they assumed the pain had stopped.
I didn't know WHO to talk to. I knew no one in my life that had gone through a similar experience. I felt lonely.
I didn't want to go around telling everyone that I was in pain, but at the same time, I desperately wanted to, to feel seen. Even if I told people, if I acted fine enough, people tended to forget. At the same time, I didn't want to make it my life, but it was a very big part of my life at the moment. The disconnect in how the world saw me, and how I experienced the world continued to grow.
Internal pain created various internal struggles.
But I did realize that many people likely had struggles no one else can see. If you don't share your struggles, it's hard for others to know. But if you do share them, chances are much higher you will find people to support you.
No one was unkind to me when I shared my struggles, it just wasn't something they could relate to. But the compassion they gave me helped me get along.
After a year or so of chronic pain, I started bugging my mom to take me to see a doctor. I felt less convinced that my pain would eventually go away.
The first doctor I went to wrongly diagnosed me with trochanteric bursitis. It was an acute pain that affected runners fairly often, and he told me I could be treated through physical therapy. Since it was a non-medicine route, my mom was very much in favor of this route.
After several months of physical therapy, it didn't seem like it was working. Those months also cost us thousands of dollars. The doctor had recommended me to take some medication, but my mom was very much against this.
Eventually, I went to another doctor who also wrongly diagnosed me. The irony was that he was like "Why not just take the medicine like the other doctor says??? I'm giving you the same diagnosis."
At a certain point, I started to get quite frustrated.
Why did I develop arthritis, when no one I knew of the same age did the same?
I couldn't help feel that maybe karma existed in this world, and maybe it was due to that. Maybe I committed a ton of crimes in my previous life or something.
I wanted a reason why this was happening at all.
For a period of time, I was in a state of despair. The pain was getting worse, spreading to my knees and shoulders, and more hip joints. I had quit track. Playing violin and guitar became painful.
I felt like a defective human being.
I lost hope in looking for a romantic partner. I couldn't feel as if I could be good enough. I wouldn't even be able to take a girl around an amusement park.
I lost ambition in school and in my work. What was the point of investing in your future, when you didn't want to live in the future?
I wanted to be pain free, that was one of things that I wanted most. Money and status stopped mattering to me, and health and freedom became some of my core values. A good life meant freedom, freedom to move how you wish and be free from being imprisoned by pain.
It was weird though. I didn't want to live, but I didn't want to die either. For one, my death would've meant extreme pain for my parents, and I didn't want to be one to inflict such pain on others.
Eventually, I started coping by paying attention to what I still had. By other means, I had a good life. I had great parents and a privileged life outside of the pain.
After a certain point, I paid a lot more attention to things I still had around. I even started being grateful for air conditioning.
Practicing gratitude saved me. My life was still very much abundant. I found joy in just living for the sake of living.
Eventually, I started seeing doctors at the Children's Hospital at Philadelphia (CHOP). They tested me more extensively, using MRIs, and overall collecting a lot more information. They had finally given me the diagnosis of enthesitis-related arthritis.
Having an accurate diagnosis gave me comfort.
Before, I had concerns that my pain was "all in my head". But having a label on things helped me much feel better, even though no real treatment has been done yet!
I felt validated in having my struggles acknowledged. The pain was real.
But the diagnosis came with another issue: it was a chronic condition with no known cure. It was also the case that the best treatments all required medications that often came with warnings like "may increase the risk of cancer" or "can cause tuberculosis to be fatal". My parents were also not big fans of western medicine. While they would financially support me with the medication, and allow me to take it, I knew it would cause them great emotional pain. For context, I think they are traumatized from me having cancer at a younger age, but that's another story for another time.
While I had found a lot of anguish in going through health struggles without many others to relate to. At this point, my peers are slowly starting to catch up with health problems as they age.
It does provide me some comfort knowing that I can provide some support in some ways that was unavailable to me. They still have to go through the majority of the struggles themselves, but I hope they find comfort in knowing they are not alone.
And even back then, I wasn't completely alone. I did start journeying onto Reddit, where you can find communities of people going through very similar issues.