Joy
Diagnosed at 38

What do you want others to know about lupus?

Living with Lupus is hard. Sometimes I reach out for support, and am so lucky to have a great support system. Other times, I'm in too much pain, feel too sick, or feel too down on myself, and all I want to do is isolate. Lupus is a chronic inflammatory disease that affects various parts of the body - the joints, blood, kidneys, heart, lungs, skin, and much more

Why is lupus a cruel mystery to you?

I can't think of a part of my life Lupus has not impacted. I have been in a flare for almost 2 years. Lupus hurts. It hurts physically, it hurts mentally, and it hurts emotionally, and it is exhausting. It is hard to have to leave behind a life where I was active, adventurous and spontaneous. I have mourned that life. I have mourned it very hard. It is time to move forward though. Many of the things I wanted in life, I will not have, but I will replace them with other things. I WILL FIGHT THE FIGHT! I will go into remission! I will be able to do many of the activities I once was able to do. As of this point though, the last few years were filled with the absence of hiking, the absence of skiing, the absence of full scuba diving, and absence of so many activities I would normally enjoy. Lupus is painful, and the inflammation can be debilitating. Even though I (we) may look healthy, that is not necessarily the case. I also have learned that I (and nobody) knows what is around the next corner. Life can be short, and it can throw you a curve ball at any minute. I've always loved my family and friends, but I learned to show it more, and to appreciate the depth of the relationships more. I've learned to appreciate the beautiful sunset, the budding spring flowers, the kindness of others. I've learned true gratitude....

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