Tricia J. - Diagnosed at age 40

It took three years of serious health complications, before my cardiologist had the idea that all of my random symptoms might be related. She said to me, “something is driving this, 40-year-olds do not have hearts that look like this,” and referred me to a rheumatologist. It took two visits and a multitude of blood and medical tests, before she walked in the room with a ream of paper printouts and said “you have lupus.” My future became cloudy and uncertain. I left in a haze, it was three days before Christmas.

My symptoms at the time were: fatigue, severe weight loss, cardiomyopathy, Raynaud’s, joint pain and swelling. I could not raise my arms above my head and had trouble dressing myself. I also had dry eyes, a low platelet count, stomach ulcers, rashes in the sun, hair loss, fevers and shortness of breath. Today 7 years later, my lupus is still active and most of these symptoms still come and go, but not to the original severity.

People should know that lupus is never the same for everyone. Lupus is insidious; its thievery is endless. The effects to my daily life are profound from lupus. I no longer teach. I no longer have the physical ability to do the things that I used to. I have lists to remember things and multiple calendars. If I overdue it one day, I pay for it for three. I have learned to do things in pieces, pacing is key.

Feeling lost and alone I searched for any information, I found the Lupus Foundation of America (LFA). At that time, LFA published a magazine, which I subscribed to. It was a lifeline I anxiously waited for in my mailbox. Within its pages, I found connection and validation. Today through the website I find reliable, accurate information about my disease. I refer people who do not understand my disease to the LFA.

I cannot do taxing physical activities anymore with lupus but I can write. Through my words, I can connect to others with lupus and we can remember we are not alone. I never dreamt I would be a published poet. Even in the darkness, light can be found. I turned my lupus journey into a “poetic hero's journey” as my son says. Hope is in our ability to not only accept our lupus diagnosis but to learn to thrive within the very real limitations of our disease.