https://resources.lupus.org/entry/now-what

personal story

I have lupus: Now what?

Lupus Foundation of America

Resource Content

Less than one month ago I was diagnosed with lupus. When I heard my specialist speak those words my heart started to beat a little faster, but not for the reasons you are probably thinking. On the outside I may have looked a little alarmed, but on the inside I was screaming “thank you thank you thank you! I finally know what’s wrong with me!” I was elated. It’s weird to write that sentence. I was elated when I found out I have an unpredictable autoimmune disease. But that’s exactly how I felt.

It took me almost eight years to get that answer. Over seven years ago I went to the doctor and said something was wrong. My symptoms were plenty, and they were very painful. I had no clue what was happening to my body. Blood tests were taken, x-rays and MRIs ordered, and the waiting game began. I saw probably 50 doctors while trying to get a proper diagnosis. Some doctors completely dismissed me as having absolutely nothing wrong with me, while others threw around names of lots of different diseases: MS, rheumatoid arthritis, fibromyalgia, etc. My friends and I joked that I should get a punch card so the tenth diagnosis could score me a free coffee.

It was extremely disheartening to say the least. I often questioned my sanity. I often pleaded with doctors to just do something, anything, to figure out why I hurt so badly, why my muscles stopped working the way they used to, why I just didn’t feel like my usual active self anymore. I rarely left a doctor’s office feeling satisfied with their answers. So I kept calling those doctors. I kept showing up at those appointments and telling my story over and over again. I kept getting poked and prodded and placed in radiographic tubes. I hated every minute of it, but I knew how important it was to keep fighting.

I knew there was something happening that the doctors couldn’t see. My body was always telling me that something changed and I knew it wasn’t normal. So I remained vigilant, and I questioned everything the doctors said. I got second and third and fourth opinions. I refused to go down without a fight, because I have one life and one body, and I deserve to be happy and healthy in that body. 

I cannot stress enough the importance of being your own health advocate. Doctors will get it wrong sometimes. I found it alarming how I could approach two different doctors with the same list of symptoms and get entirely different responses.  Doctors may be experts on medicine, but they aren’t always experts on how your body is feeling. You are the expert on that. So listen to your body and fight for it with all the strength you can muster.

It might take me awhile to completely understand the impact that lupus will have on my body, but I’m so thankful that I won’t have to wait another 7 years to find out why I feel the way I feel. It’s like I’ve been given a fresh start. Although lupus can be scary, it’s comforting to have a name for my disease and an online community of people who understand my story.  It’s the smaller changes since my diagnosis, like being able to share my story with the Lupus Foundation of America, that I really cherish. It means so much to know which organizations I can reach out to when I need a little help. I believe in strength in numbers, so I’m very relieved to finally belong to a group of survivors like all of you.

Lisa Walters

is living a happy and healthy life with lupus after waiting almost eight years before getting the correct diagnosis.