Disclaimer: I’m not a medical professional. This is just my personal experience and should not be taken as medical advice.
I’ve long struggled with back pain. I thought it was because I sit like a shrimp and am generally not a very active person.
It started in my early 20s during university.
I would go to physio-therapists, they would recommend exercises. I even got an x-ray at one point. The message I internalized was that I was not doing the right things to avoid getting this chronic pain.
I bought ergonomic chairs. I bought standing desks. I resolved to walk 10,000 steps a day. I paid again for physio-therapy. I went again to the doctor to complain. I lifted weights for a year, pushing through what I realize now were flare ups. I thought I am using my muscles wrong. My core is too weak. My back is too weak. I stand wrong. Or I sit wrong. Or I sleep wrong.
People would tell me they also have back pain, and share what worked for them. “Yeah we’re all getting older! Sucks right!”. I should meditate. Or do yoga or pilates.
I’m sure I don’t have the healthiest life style, and probably it all adds up, but I felt like maybe I was just too sensitive. My pain threshold was lower than everyone elses. I just had to deal with it.
Finally after more than 10 years and another x-ray there was something actionable. Sacroiliitis, inflammation of the sacroiliac joints. Finally something quantifiable.
It was a relief to know that it wasn’t ‘in my head’. That I wasn’t exagerating.
After a bit of bloodwork I learned I have the “HLA-B27” gene. 90% of people with these symptoms have this gene. But less than 2% of people with the gene have these symptoms.
The doctors asked me a couple of times “have you ever had a red eye, or any kind of inflammation of the eye” when they were trying to determine my diagnosis.
I never had. I didn’t really understand what they were asking. I had conjunctivitis before. But thats a different thing.
Well the past two weeks I learned what they were talking about. It’s called uveitis, inflammation of the eye. I was somehow not prepared for this to appear. 2026 started off really good, I was in a good groove and hopeful.
I noticed a bit more eye strain while reading. I noticed feeling a bit off, a bit more tired.
Then one day at 4am I woke up and noticed my left eye was red, and my eye-sight was much worse than usual. There was a real loss of contrast.
I thought for a while about what it could be. Conjunctivitis again? But then I remembered the doctor told me that if I ever had symptoms in my eye that it requires urgent care.
I didn’t know if I should go to the ER, or if I should wait. I ended up waiting and calling the rhuematology clinic’s number when they opened.
They told me to come in at around 14:30.
Waiting from 4am till being seen was an exercise in staying calm. I talked to ChatGPT to try and get some information about the severity. How quickly does this condition cause damage? Did I wait too long? I trusted that the doctors know how to triage this properly. If they are comfortable letting me wait till 14:30 then it probably is not causing lasting damage. But the sudden change in my vision was really upsetting. I remember consoling myself with the thought “At least I have a backup eye”
They ran various tests to quantify my condition and started me on eye drops. They seemed to help at first, but a few days later my vision got suddenly much much worse. Whereas before things were a blur, now it was just completely covered in fog. I figured out that there are a bunch of cells floating in the liquid in my eye. Debris from the inflammation. They are scattering the light making it hard to resolve an image.
Thinking about how a camera works, I was able to figure out that the sensor, the lens, and the apperture were all working fine. I was able to resolve detail when I squinted, I could see lots of little cells floating in front of me. The issue with my vision was that there was just a bunch of junk between the sensor and the lens scattering the light. If that junk goes away, I figured, I can see again. There does not appear to be damage. What’s the rate that the junk is being added and being removed? Is my body able to remove junk fast enough? I understand why they want to stop the inflammation quickly, since that is what is causing this junk to increase.
I called again for urgent care, and after various tests, got told to increase the eye drops as well as start taking oral steroids.
I also have some medication to protect my stomach, and eye-drops to dilate the pupil to avoid it from sticking to places it shouldn’t (as far as I understood it).
This has stopped the inflammation for now. I can still see lots of little cells if I squint, and I have new floaters now. But I’m so thankful that my vision is basically clear now. The eye is not really able to focus very well because of the eye drops that dilate the pupil. But that’s fine while I am recovering.
I am now tapering off the steroid medication. I have to admit, the medication made me feel good at first. Surpressing all this inflammation made me feel more energetic and focused. But then I started to feel a bit aggitated and over-driven. It’s a common side effect.
Both the eye drops and the pills are being tapered very slowly. I understand this can happen again to the other eye. I asked the doctors if there is anything in my control… is it something I ate, is it my lifestyle? They told me no. I still somehow find myself trying to find that thing I am doing wrong that if only I knew it would ‘fix’ me. Maybe ironically this kind of anxious self critical inward awareness is contributing. But I’ll stop that train of thought here :D
I’m learning to accept the situation more. Sometimes you’re just unlucky and you gotta make the best of what you have.
My quality of life is great. Right now all I have to do is take some meds. I can walk, I can see, I can breathe, and enjoy my life.
I’m grateful to the team of doctors and staff at Erasmus MC. I’m grateful I can basically get there within 15 minutes if I need to.
And I’m a little proud of myself. It was a scary time that I think I navigated correctly. I was able to stay calm and get the help I needed.
If you have unexplained recurring backpain for years, that improves with movement or anti-inflammatory medication like ibuprofen, it might be worth to read into Ankylosing Spondylitis or Seronegative Spondyloarthropathies.