I have a rhumeatoligist and cardiologist I’m waiting for GI but here’s the thing I was told I have microscopic colitis which is so painful I can’t even explain and I have sle lupus rynauds sjorgens mctd I am seriously overwhelmed because when I have say for example my chest hurts take x ray clear like by the time a person gets in the specialist it could be gone anyway enough complaining lol 😂 I look great though 💜😂
July 3
That frustration is completely valid, and so many people with lupus feel exactly the same way. When your body is screaming that something is wrong, a negative test result can feel like being told "it's all in your head" — and that is genuinely painful on top of everything else.
Research involving thousands of people with Show Full Answer
That frustration is completely valid, and so many people with lupus feel exactly the same way. When your body is screaming that something is wrong, a negative test result can feel like being told "it's all in your head" — and that is genuinely painful on top of everything else.
Research involving thousands of people with lupus found that when doctors dismiss or question symptoms, it can lead to real emotional consequences, including anxiety and depression. Some people even start doubting their own experience, asking themselves "am I making this up?" — which is heartbreaking, because the pain is very real. A MyLupusTeam member put it simply: "I know I don't look sick, so it's easy for people to forget. I am really good at hiding my pain."
A few things worth knowing:
- Lupus is notoriously complex to diagnose, and no single test confirms it
- Symptoms can be very active even when certain test results appear normal
- Tracking symptoms in a journal can help paint a fuller picture for your doctor
- Asking for a referral to a rheumatologist, if you don't already have one, can make a big difference
You are not imagining it, and you are absolutely not alone in this.
July 3
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