Lupus and how symptoms don't always fit inside a disease

Posted by rachelpatrick22 @rachelpatrick22, Jan 31, 2019

I had posted for the first time a few days or so ago with questions regarding time it takes to diagnose and ease. I expressed frustration because it has been more than 8 years since my first symptoms surfaced, although minor at that time, and I dismissed them multiple times. Well, I found out it’s lupus. And from what I’m reading on the internet, it’s very common for the diagnosis to take many years, an average of 6. And to be misdiagnosed multiple times.

I hate the fact that I have this disease, but I am extremely relieved to know that I’m not a crazy hypochondriac with 30 separate diseases and countless symptoms, that all of it has been caused by one autoimmune disease as a domino effect. I never thought in a million years that I had lupus because I didn’t have the butterfly rash. I found that only about 50% of people with lupus have that rash. Instead, I have inflamed ulcer like lesions that leak clear fluid on my skin, and sores in my mouth and gums. Sores in the mouth and gums are more common than that rash.

Moral of the story: don’t assume that your ideas of what a disease looks like encompass your symptoms, and don’t feel like you are a hypochondriac when you feel so terrible everyday. Don’t be afraid to get medical help and go to many doctors until you get the help you need. Don’t be afraid of the negative things people may think or say about you being concerned with your health. And don’t let any of that stop you from getting help. Because only you know how you feel, only you will care enough about your health to get help. And it may take a whole lot of work, but don’t give up and keep fighting for your health.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

Blisters in your mouth MAY be MM Phemphigoid… ck it out with DERM DR


It’s not, but I appreciate your input.

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