As many people with an autoimmune disease will tell you, one of the major problems is getting an actual and accurate diagnosis. Many people wait years and years before getting one (I’ve read stories about some individuals waiting up to twenty years). And yet that’s where I find myself at. While my ANAs have been very high in the past, and I have chronic pain – though its not concentrated to the joints and often runs along the nerves and muscles – and I have fatigue, that isn’t actually enough for a diagnosis. On my visit to my rheumatologist last week she doubled-down on her lupus diagnosis from a few years ago. Now we’re fibromyalgia.
I gotta let my happy shine through.
That’s not ruling out the possibility of lupus, but with no other diagnostic criteria – the in form of symptoms or bloodwork – there isn’t any reason to conclude it is lupus. However, she didn’t take me off plaquenil, which is used to treat lupus. Instead, she ordered more bloodwork, an ultrasound and an MRI. But where does that leave me? Where does this leave every patient who clearly has something wrong but isn’t given definitive answers?
My coworker asked me today how I manage to live while always in pain. My answer is resilience.
It’s hard not to get frustrated. And one thing I’ve worked on in personal therapy is the ability to identify emotions that go along with pain, and yet work through them at the same time. Ultimately, is it helpful for me to be frustrated? Not really. Is it more beneficial to go with the flow? I find it to be easier on my mental health and stress levels if I do. Will I eventually get a diagnosis? Probably, but I also hope I don’t have to wait another seventeen years for one.
My current answer to all of life’s questions is Baby Yoda (yes I know it’s not actually Yoda).
If anyone reading has any experiences they’d like to share, I’d love to read some comments. It again makes me interested in doing a documentary on the crazy world of autoimmune diseases.