A few weeks ago I posted here frustrated and confused after my initial encounter with a consultant rheumatologist. I left feeling medically gaslit. I wasn’t assessed with curiosity but rather it seemed I didn’t fit into the average patient in her department which she stated was 90% women over 60. I am 25 and male. She also suggested my Ro60(SSA) was either false positive or the ANA was false negative. All of her assumptions of me were wrong. I wasn’t asked to expand on my symptoms or given space to express my experience but rather made me feel like I shouldn’t have even been there despite compelling blood work. It was hard to believe, a massive amount of skepticism based on cognitive bias and ANA negativity (which is none specific to sjogrens).
She ordered broader comprehensive blood testing to her credit that reaffirmed my GPs referral. Largely raised immunoglobulins, positive SSA, slightly raised CSR, neutropenia, elevated serum phosphate/(Renal tubular involvement) and a newly discovered positive anticardiolipin antibody.
The stress in between caused me to have a debilitating flare which also seems to have triggered autoimmune alopecia areata.
My experience completely shifted at my follow up when I met with a registrar doctor under the consultant I initially met. She was very well informed on sjogrens, all the directions my words worked towards she was able to connect dots to and acknowledge its relevance. She listened, she asked questions with a genuine curiosity in how it affects me and prompted me to share more. Following her assessment she formally diagnosed me with Sjögren’s syndrome. My mum came with me this time which I really feel shifted the tone and dynamic.
I want to emphasise if you have an advocate who knows how much you’re struggling, bring them with you! As someone who also struggles with autism and ADHD (it’s interesting to see the overlap with learning disabilities) when I’m put on the spot I immediately forget a lot of relevant information.
I have built my own analytical framework I’d built around my symptoms and I had become so focused on building the case, wanting to be believed that I’d disconnected from the reality of what I was experiencing. I sympathise with those who are still struggling to feel clinically validated in their experiences.
The diagnosis wasn’t a surprise it was a relief, but also a lived experience to what so many speak to in this forum. Of not feeling believed or cared for.
I’m now starting hydroxychloroquine and above all I’m grateful I’ve caught it this early in my life. Although my journey here was difficult I appreciate it could’ve been a lot worse.