How old were you when you received your diagnosis? How did it make you feel?
Hello Everyone! My name is Arianna, I’m a 24 year old woman who was very recently diagnosed with AS. I’d like to preface this by saying that I always thought of myself as a perfectly healthy person, so this really blindsided me. The diagnosis came Monday, after 3 years of seeing different specialists and dozens of blood tests, MRI’s, CT Scans, and 8 hour travel round trip for every single appointment. This process has been long and tiring, and to be perfectly honest, I always had hope that it was all a witch hunt. Again, I always thought of myself as a healthy individual, so despite a positive HLA-B27 and a definitive MRI finding, I’m still in denial somewhat. I’m set to start Humaria soon, and I’ve fallen down the rabbit hole of different side effects and it’s actually what brought me here. My question to the community here is how old were you when you received your diagnosis and how did it make you feel? I feel like I’m on this emotional roller coaster of grief and acceptance then I go back to not wanting to believe that I have anything wrong with me at all. This is all so frustrating and confusing, and I feel so lost. I don’t know anyone who’s struggled with this, and I feel like my husband and family aren’t really understanding or seeing how hard this has all hit me. I know it’s not stage 4 cancer, but it still feels like a big diagnosis that I really wasn’t wanting or anticipating. It still feels like my life is going to change dramatically because of this condition, and that’s such a punch to the gut. I am trying to be as optimistic as I can, but I also feel it’s important to embrace the fact that this news sucked, and I’m not happy about it.
Hi
! Thank you so much for sharing your story! It takes a lot of courage to open up like that, especially when everything still feels so fresh. What you’re feeling is completely valid. Your pain, confusion, and fear are real, and it's understandable to feel isolated when the people around you don't fully grasp the weight of it all. And at 24 years old, it takes much strength to go through something like this. While you wait for others to share their diagnosis experience, I want to share with you an article written by one of our contributors who talks about coping with a new diagnosis- https://axialspondyloarthritis.net/living/how-to-cope-with-a-new-diagnosis. Here's another where others share their diagnosis story- https://axialspondyloarthritis.net/living/advocates-diagnosed. Please know that there are members here who understand what it’s like to go through this emotional roller coaster, and I hope you give yourself a lot of grace while you work through it. And while you do, know that this is a great space to find connection, reassurance, and hope along the way. We're right here with you so you're never alone 💙 All the best, Latoya (Team Member)
