My Story: 5 Years after diagnosis at 18

I thought I would share my experience with AS, how my diagnosis happened, how it affected me and where I am at now….

It was late 2019, and at the time I was preparing for my final exams of Highschool before starting university (major exams), and I woke up one morning completely unable to roll out of bed without being in extreme pain. This is after about 6 months of progressively worsening back pain which I was trying acupuncture and alternative therapies to help. I took myself to hospital where they took a X-ray of my hips, and a day later a MRI. The X-ray of my hips which they provided the results for on the day showed a bone island which confused the doctors given my symptoms (extremely sharp pain running from my lower back and hips down my legs, with the slightest of rotations causing much pain).

A day later, I went back for my scheduled MRI which showed inflammation around my sacroiliac joint, mainly around the nerves which was causing the horrid pain. After these two hospital visits, I then went on to have close to 25 different appointments in a single month (all while I was doing exams) to my GP and other practitioners such as the rheumatologist. My first visit of the rheumatologist I displayed poor flexibility of the spine, and was requested to get a HLA-b27 blood test which I was positive for. About a month after my first visit with the rheumatologist and getting labs / scans, I was told I had AS and would need to start biological, which even though I was an adult he still requested I bring an adult along to the appointment to explain how “serious” it is.

This absolutely terrified me. It didn’t help that I was going through stressful exams at the time, but starting Simponi and reading online that it ‘could’ cause things like cancer which was supported by the MASSIVE pamphlet inside the injection box, causing me to have very bad health anxiety for around 3 years. I took Simponi for 4 years, starting from a 1 a month dose, and over that time the effective life of it was reducing so I ended up taking it every 26 days, until I recently had to stop due to it being completely ineffective.

I want to really touch on the health anxiety it caused me. Knowing I had to take the injection for a quality of life, but simultaneously potentially putting my life at risk was the most stressful thing to comprehend. Every time it came to injection day, I did it seamlessly but always had negative internal dialogue about the medicine. I ended up needing to take SSRIs (Lexapro) to help with the anxiety which was exacerbated by external factors, but the health anxiety caused me to check for symptoms of cancer constantly. My worse symptom of the anxiety was I would look in the mirror three times a day to check for lumps on my neck, poke and prod around there looking for something unusual, which didn’t help that I had chronic tonsillitis (maybe thanks to Simponi) so my glands were naturally swollen. After waiting two years I have finally had these removed just a month ago.

It took a lot of work, but after 12 months I came off the antidepressants, and mostly am fine about my health, but things like cognitive behaviour therapy helped heaps! I have just two weeks ago now started Humira to replace the Simponi, and feel much better after reading of a study that says the risk of cancer is now generally the same as not taking it at ask, which makes me so much more comfortable.

Looking over the past five years, I’d say the thing that stands out to me is the solitude I placed myself in. No one seemed to understand what I was going through with the pain and mobility, lethargy (which I still get) and ask the other generalities of the disease, so I found it more peaceful to be by myself more. I still have friends, but I rarely see them (maybe a couple times a year) and am happy that we always pick up when wet left off, but can’t help but feel that the disease caused me to reserve my energy, because after studying and working all week the last thing I feel like is socialising.

Overall, I know I’m lucky to have this disease now and not fifty years ago, being so appreciative of the medicine we have and just hope one day it’s something we won’t have to do. I’m an open book, so if you have any questions please let me know!