My First Rheumatologist Appointment Was a Nightmare

I've had some strange symptoms for the last few years, but ever since I had human metapneumovirus (hMPV) and was hospitalized, it's like I never really bounced back completely.

The Impact of Invisible Illness on Daily Life

I've had asthma and now officially COPD since I was a child. I lived through bacterial meningitis with a fever of over 108 for 2 weeks and woke up from a coma deaf for 6 months. None of that is like this. This lupus diagnosis has shaken my whole world. Not only do I feel like no one believes me when I can't move, or when I have to sleep for a whole day (or several days) to recover from doing 1 extra thing, like going to a concert with friends. But then I finally get to see a rheumatologist 4 months after my PCP told me my labs were positive for lupus, and it was a horrible experience!

My Experience with Medical Gaslighting

It has taken me a whole week of praying and inner reflection to even articulate how that appointment affected me.
My first appointment with a rheumatologist in my life was not what I expected. I never asked for all these symptoms and all this exhaustion, but it's real. She made me feel like I was crazy, or making it all up, or because I was having a good day when I went it just didn't translate to her - but she treats other people with this right? We don't have all bad days, and I've heard plenty of people say no one knows how bad we feel because it's not visible on the outside. So how could an experienced rheumatologist be so narrow minded?

When a Rheumatologist Dismisses Your Pain

Maybe I didn't describe my symptoms well? Maybe I said joint pain when I should have said muscle pain....I have never done this before- but I ache so badly after a day at work, and I've been a nurse for 20 years and before that, a CNA since I was 16 years old. It's like the first day of the flu going on in my body everyday. I know hard work and I know this pain and exhaustion is not normal. She said, well your labs and your list of symptoms certainly line up, "but I'm not convinced". OK- then tell me what it IS and fix it. I don't want lupus- who wants it? None of us want it. No one wants to be poked and have to pay $200 just to be second guessed when I thought I was going there to be helped. I thought, finally, we can come up with a plan and I can learn how to manage this better and have a little bit of my life back. Psych.

Seeking a Second Opinion

So while she's running "a few more tests", I have found another rheumatologist near me and have a second opinion in January. Am I wrong for that? I just want to be heard, believed, and to collaborate with someone who knows how to treat me to come up with a plan.