When I was first diagnosed in 2011, I was so relieved to have a name for my mystery illness, that I didn’t stop to worry about the actual disease itself. I was under the care of someone only treating my organs, not lupus. I didn’t understand flares and bad days, the fatigue and intense body aches, the brain fog and lack of memory or the mood swings and side effects of medications.
My family and friends didn’t understand why I couldn’t work and lost the job I loved and thought I was overreacting. Through my Lupus Connection Support Network I learned, I was NOT alone and NOT overreacting. When I was hospitalized again in 2013 for kidney failure due to lupus, my LC group came to see me every single day for 10 days, shocking my medical team with their positive outlook, optimism and support. They even brought me a stuffed cat so I didn’t miss mine at home.
There was no other foundation or group coming to my aid or offering support when I was alone and scared in the hospital. LC helped me find the right healthcare team to treat my entire disease, assisted with every step of filing for disability (and celebrated with me when I was approved!) and empowered me to take accountability for my own disease and lifestyle management. My Care Coach and Mentor spoke with my friends and family to help them understand my conditions and helped me improve my quality of life.
I’ve been so overwhelmed by their support that I volunteered to help with Lupus Connection.
I’m not just a co-founder, I’m also their first client.
– Jennifer T, 35