Hi there- I can relate to the uncertainty about the diagnoses and also about the provider… I’m guessing many here could. I’m very sorry you’re going through this, but at the same time please know it’s very brave to step up and into a system that’s not always kind, or even set up to support these kinds of conditions, so that you can take care of yourself and hopefully obtain the care you deserve!

I’m not very familiar with the conditions you and others have mentioned here, but I did want to comment on the uncertainty you shared about the provider.

You’re right, and your provider could very well be super-busy, and online reviews don’t always tell the whole story. Or they could have just been very rushed. And maybe they’re an awesome provider and it just wasn’t their best day. It’s hard to judge after just a brief first appointment.

At the same time, I’m a brown woman and I’ve also been dismissed—several times—when I was first starting to see care for what became multiple intertwined conditions. I can’t be sure if it was because of my race, gender, age, any of the above or it the providers were just condescending, but sometimes it was obvious. I just…wanted to acknowledge that sometimes that can happen too.

And even if it’s not something so insidious as that, it can also happen that you just might not click with a provider, and that’s okay too. I think a lot of the time, we want to be “nice,” not judgey, etc., and at least for me I’m way more likely to blame myself for doing something wrong, forgetting, not remembering or understanding something that was or was it said by the doctor first before realizing that sometimes they actually may have been partially at fault.

Either way, for these complex autoimmune conditions, I personally feel it’s vital to feel comfortable with my rheumatologist—that I could tell her anything about my symptoms, the treatments, and if I’m confused or worried and why that is, so that she can help. It could be the best and most experienced provider ever, and of course experience is important, but if that fit isn’t there, it’s just really hard for me to feel connected and safe and trust my provider. I find myself holding back or just being more stressed than I need to be about appointments.

I’m not sure if you have this option, but eventually if you find you don’t feel comfortable keeping open lines of communication with your provider, it might help to get a second opinion or see if another provider could be a better fit if that’s an option?

The first rheumatologist I saw was correct about my diagnosis, though she had the least amount of information available than anyone I saw later. She was nice, but she was very abrupt and short in her communication style. I’m accustomed to medical information but every time she explained something I got confused. We kept unintentionally getting mired in confusion or disagreements. We just weren’t a good fit.

I felt super self-conscious about telling her how I felt but ultimately she was really understanding when I said my PCP and I had decided it might work better to get a second opinion and try meeting with another provider. Long story, but I actually ended up seeing two other rheumatologists because there was a lot of uncertainty about my diagnosis, so I went to another medical center first before returning to the place where I see most of my providers.

But my point is, on the third try it worked out and things are do much better now. Hopefully it doesn’t take you so long, or maybe you won’t need to do that at all!

But I wanted to share it to say you’re not alone and it is confusing. And I truly hope you find answers soon.