My Story

My name is Ashley B. and I am a 22-year-old graduate student. I study how teens and young adults form disability identity and their sense of self, especially in times of transition. My research is important to me, but it’s inspired by my own experiences. Let’s dive in.

The Beginning

I first started experiencing chronic pain and fatigue after I had just turned 18 (June of 2018). I had just graduated high school and felt like I was on top of the world. I was set to leave for college in a few months, and I was working 2 jobs to make some extra cash. After I would get home at the end of the day

I would be exhausted. Not just tired in a way where a nap would fix it. Beyond exhausted. I couldn’t go anywhere with my friends, they all thought I was intentionally avoiding them.

I had always had bad knees. I am hypermobile and took advantage of my ability to throw my body around. I was a dancer and I was in the marching band (a drummer). But I wasn’t doing either of those when my knee pain began. That was the first major red flag. I couldn’t stand for longer than half an hour without intense pain, but if I sat still too long they became so swollen that walking was also difficult. It felt like a lose-lose.

I knew something was wrong but I couldn’t pinpoint it. I went on an anti-inflammatory diet, basically cutting out every food that I actually enjoyed. (I’m a carbs girl at my finest). That worked. I had more energy and less pain, but something still felt off. I was losing some weight and everyone kept telling me how good I looked. I didn’t feel good.

Flash forward a few months to my first semester of college. I was in a collegiate marching band playing the bass drum (Go Hogs!), which was one of the most physically intensive things I had ever done. This brought upon the hand pain. To this day, I can say that the hand swelling and pain I experienced in the fall of 2018 was some of the worst pain I had ever felt. I would wake up for my 9am class and have to spend half an hour psyching myself up to get out of bed because the pain would have slightly subsided by then. I couldn’t write with a pencil, and playing the drums got significantly harder. I was devastated and confused.

I got a diagnosis. Polyarthritis. It felt like a nonanswer. Yes, I obviously am having joint pain. Can we please figure out the cause? Like many, my bloodwork showed up negative for everything. I went on Plaquenil and felt like a human again by New Year’s 2019.

2019 was a fairly mild year. I would flare up when it would rain, and I had to watch for brain fog and fatigue. But I was functioning, and that was all I could ask for.

The (Extremely) Rough Part

Then I had the 2020 from hell. Not to say that we all didn’t have a hellish 2020, it was a garbage year. But I felt like I was perpetually getting kicked while I was down. I entered a major flare in April that left me bedridden. I tried different medications that didn’t work. I got E. coli and ended up in the hospital. I broke up with my boyfriend. I was taking 16 ibuprofen a day to even resemble pain management. While that was all happening I was planning and running an online summer camp by myself. I was a mess.

Shortly after my stint in the hospital for E. coli, I found a new rheumatologist. She did a full range of tests that had never been done on me before and discovered I had gout. Naturally, as a 20-year-old, I had to laugh. Of course all of this had been because of gout. I went on allopurinol and colchicine and my pain got better. But I wasn’t cured.

That doctor also did a Vectra test. This test shows rheumatoid arthritis activity in individuals who have previously not shown results in other blood tests. I had run with the gout diagnosis for a while, but I finally decided to mention the test to her. She then tells me that I have moderate rheumatoid arthritis disease activity. Finally, an answer.

I never had that moment of relief. Maybe a moment of quiet. Maybe of peace. But not relief. Gout had been the easy answer. It wasn’t autoimmune and was mainly manageable through diet. This was a whole new battle.

I had previously responded poorly to methotrexate so the next step was a biologic. But I wasn’t ready to be immunocompromised in a pandemic. So I held off as long as I could. I stayed in intense pain for months, on purpose, so I could live a life where I wasn’t scared. I graduated a year early and the day after my graduation- started Humira.

And it worked beautifully. I felt like myself again. I could do more of the things that I loved. Remission was beautiful.

Until it wasn’t.

I developed an immune response to Humira in September/October of 2021. I was only on it for 6 months. I was devastated. And it was scary too. I would develop giant welts when I injected, and one afternoon I had a moderate allergic reaction where I had trouble breathing, was dizzy, and had hives. No one told me this was an option.

A side note: If you are considering a biologic, please don’t be scared by this. My timeline wasn’t very typical, and I didn’t know the warning signs of this reaction so I stayed on the med longer than I should have.

Back to it. I switched over to Cimzia. It felt scarier since it was an actual syringe instead of an auto-injector. But I managed.

Until I got COVID in January of 2022. The timing was horrible. The medication had just started working and I had to stop injecting until I felt better from COVID. It was a major setback- and put me back into a flare.

For several months, I maintained hope that Cimzia would work. That the 5 weeks that I had to pause my injections wouldn’t screw up this medicine forever. Unfortunately, it never worked the same.

I now take Orencia and I hope that it will provide me relief.

The Present

This brings us to the present! I am still trying to enter remission and grow stronger. In the past year, I’ve developed other problems such as osteoarthritis in my spine and other lumbar problems. With my gout, rheumatoid arthritis, and osteoarthritis, I’ve given myself the triple crown award. You know, the one that they use in horse racing.

Despite all of my health complications in the past few years, I feel as if I’ve done some pretty incredible things. I graduated early and with honors. I was accepted into an MS/PhD program at 20 years old. I’m navigating graduate school and academia while pushing through chronic pain and fatigue.

I don’t want to be your inspiration porn. I’m disabled and trying to accomplish my dreams despite my body fighting against me. I’ve felt lucky to have support throughout my journey and the most understanding professors and advisors. I have found a program that supports and accommodates me. The reality I have created is one that stems from privilege and people believing me.

To end my story on a fun note, I’ll share some of the things that I love and enjoy. My partner is one of my greatest joys. He is beyond supportive and is my best friend. I love to paint (when my hands aren’t swollen), and I also love to cook. I love to write poetry about my experiences, which you might have stumbled upon here on my blog.

This story is not one I ever envisioned would be mine. But I’m happy to share it with you.

-Ashley B. aka Chronically Over It