My Experience with... Medical Grief
This post will be discussing my own personal experience with grief due to a physical health diagnosis. Mentions of death, suicidal ideation, trauma, needles, medical treatment, and chronic illness. This is not an educational post. This is a personal story.
On the 18th June 2026, I went to the hospital. Something that had become a weekly event. Where I was awaiting test results. My doctors sat down with me to tell me I have Undifferentiated connective tissue disease. A progressive autoimmune disease where my immune system attacks my joints, skin, muscles, and nerves. There is no cure.
How did this happen? I am 24, no prior physical health concerns. February is when symptoms started. Collapsing, migraines, pain in my whole lower body, leg sensations, muscle weakness, just to name a few. As weeks went by and tests came back inconclusive I got worse. Falls became more frequent, legs got weaker, my outlook shifted.
In March I had been sent to hospital for extreme risk of suicide. Why? My legs didnt work and I kept being late or missing important things. I felt like I was failing. If I couldn't walk what was the point? How was i supposed to do anything? No tests where done on my physical health at this point. It was ruled to be due to my BPD and Bipolar Disorder. No one looked at my legs.
First week of May. Im rushed to ER due to being unable to hold my own weight, ability to walk was almost completely gone, falls were constant, I was very sick. I presented to ER with legs symptoms, a viral infection, migraine, and a couple days after conjunctivitis. My immune system was not helping me get better, it was attacking my legs.
This is when I became hospital outpatient. Weekly appointments, many GP appointments, brain MRI, spine MRI, over 20 blood test vials in the space of a month, and hours spent in waiting rooms. The hardest part was being in those appointments alone. I'd look around the waiting room and see everyone was older than me, and they all had someone. I had a support worker who was getting paid to sit with me. And just in the waiting room. The actual appointments, the tests, the results, even the diagnosis, I was completely alone.
So that day, 18th June, I was alone when I found out. I found out I would never be fixed, I would continue to have bad days, and I have to wait over a year on a waitlist to see a specialist. I was alone when I found out my whole life had changed forever.
So now I grieve. The loss of who I was before February. The person I use to be when I didn't have to think about my legs. The girl who's favourite part of the day was going out, and now I can't wait to lay down. She had no idea this was going to happen. She lived in herhead so much that life with stable legs was taken for granted. I'd give anything to be her again.
We were a dancer, adventurous and spontaneous, kinda stupid, and felt young. Now I come home and rub magnesium cream on my knees, take pills with my meals, and have to sit in the shower. This isn't just the loss of my health, it's the loss of me.
I miss all the walks, the beach days, random adventures with my friends, fun work days, and dancing. I miss being able to stand long enough to cook. I miss not having to lean on every counter or table.
I think about the accommodations that I will have to make for the rest of my life. I can only go to gigs and concerts if there are seats. If I want to go for a hike someone will have to come with me. When I go to the beach ill have to limit my time due to medication. I'll have to give up dancing for a while, maybe forever. Everything is different, everything has changed. I have changed.
I miss who I was. I miss who I could have been. And I miss my health.
Its hard doing this all while I am young. Its hard to find others my age who know what im going though. Its isolating and lonely.
I just want myself back.
-Jen xx
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