Getting any type of diagnosis can be hard, but it's even harder when symptoms cannot be visibly seen but only felt by the patient. Sadly this is more common than we think. The term for this is called medical gaslighting. This is when the health care team or even the patient themselves dismiss or belittle the symptoms leading the patient to doubt themselves on what is going on. This can lead to catastrophic consequences if not dealt with properly.
Lupus symptoms began as joint pain
I remember my initial symptoms were joint pains. I would be in so much pain when I woke up. I couldn't open door knobs, do my makeup, or even point without feeling so much pain. In the beginning, I kept telling myself maybe it was because I was getting older. Is this what old feels like? I didn't know at the time, but I was medical gaslighting myself. But, the pain never went away, and soon walking became a struggle. I knew something was wrong, and I needed to get to the bottom of it.
But, soon, I was experiencing more pain. I had chest pains and shortness of breath, and then my legs and feet were so swollen I couldn't fit into my shoes. Thank goodness it was summer and I could wear flip-flops. When I went back to the doctor, her exact words were, "Oh my. This is not good." Once my symptoms were visible, she realized that it wasn't in my head.
Advocating for myself
I told my PCP to schedule me all sorts of tests and schedule me for specialists because I wanted to get to the bottom of this. As a patient, I had to advocate for myself. I knew something wasn't right, and I should have been more adamant in the first appointment. After seeing so many specialists and undergoing scans, bloodwork, etc., I finally got my lupus diagnosis. I cannot imagine if my legs hadn't become swollen, would I have ever received the proper care I needed.
As a patient, we would hope that our healthcare team would do right by us and get us the proper treatment that we need. Unfortunately, in the chronic illness community, many patients have to fight to get the proper treatment that they need. A lot of the time, the symptoms may not always be so apparent. The symptoms are "invisible" or sometimes mimic other diseases, so it's hard to pinpoint exactly what it is. So, ultimately as the patients, we need to advocate for ourselves if proper care is not being done. We know our body, and we know when something is off. Ask questions, demand answers, and find other doctors. Do not settle.
Common medical gaslighting phrases
Here are some common medical gaslighting phrases to be wary of:
- It’s all in your head.
- It's unnecessary to do other tests. Your labs are normal.
- That kind of pain is normal.
- Have you tried exercising or changing your diet?
- Are you the doctor or am I?
Have you experienced medical gaslighting? What did you do to overcome this?
How many times were you misdiagnosed before learning you were living with lupus?