Lupus is a conundrum - not easily solved, a puzzle, and a very challenging disease. I have come so far since my lupus diagnosis. I grew up. I learned that my illness doesn't define me, but adds challenges to my life and my career.
While lupus has caused great pain and fear, it has made what I have achieved in life feel more meaningful. Lupus has taught me that not everyone runs away, and that you really know who loves and cares about you in those harder times. Some people will take the time to learn about your illness, to encourage you, and understand you.
I also had to learn about lupus. I didn't question much when I was first diagnosed. With time and experience, I learned not to be afraid to question doctors and not to be afraid to make changes in my medical team. Sometimes the only way to get "unstuck" or ensure changes in your condition are being seen is to get fresh medical eyes on the old problems.
I learned the value of partnership and team-building among doctors. There is great value in building a multidisciplinary team to hold everyone accountable and to ensure that knowledge is being shared. I learned that there is hope with time, that new medicines are out there that help, and that we need doctors aware of the latest, with a critical eye.
Living with lupus has also taught me the importance of connecting with others with lupus. We are all unique and experience lupus differently but we share our experiences because we share common threads. We have different experiences with treatments so we have to share our stories to help ourselves.
Lupus has shown me the importance of patience, compassion and love. A lot of people misunderstand lupus. People need to understand that lupies are not lazy or apathetic, but suffering with a dangerous illness. Lupus attacks organs, causes us to fall, sends us to the ER, and requires heavy duty medication with serious side effects. Sometimes we share our stories to soften tough hearts who don’t understand our challenges. We don't always win, but we can try.
All these lessons are what lupus means to me. Lupus has created a woman highly sensitive and knowledgeable about her body. A woman who wants to live her best life possible. A woman who wants more out of life than the "sentence" that this disease gives us. I want more and I am not afraid to fight. We who have lupus fight every single day, and sometimes hour to hour and minute to minute.
I stand ready for the next battle at any time. Lupus may knock me down, but I am like Rocky. I get back up for that next round, no matter how many times lupus takes me down. I am going to get the help I need and if I am not satisfied, I will move on. That is our fight and we can do this. We have the right to wellbeing.
This article was written by MyLupusTeam member Terri as part of the Member Spotlight Series. Terri is an IT Project Manager who works during the week and likes to crash and rest on the weekend.
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