My name is Julie 51 years old. 2004 I was in a severe car wreck. My best friend died on impact. I was left to die in the car with bad injuries. I have been in rehab since then, I have been diagnosed with PTSD. I also diagnosed with CREST syndrome. My family is not supportive did not believe the injuries were real. I cut ties so I would not get sucked into a hole with no escape. I rely on many doctors, nurses, others like in-home supportive services (IHSS). They really care.
When Family is Unsupportive
Family look at you do not see you're pain because they choose not to. The damage to my spine, I was almost paralyzed from the neck down. In 2017 I had anterior cervical discectomy and fusion (ACDF). I ALMOST SUFFOCATED FROM THE SWELLING. The family they looked at me like I was not real or invisible. I cut ties and moved away to save my own sanity. They did not care I was disabled. Why can't you work? You're faking. The chronic pain is daily I have severe headaches, nose bleeds, vertigo, exhaustion my naps 13 hours. My doctors, psychiatry, pain group keep me grounded by teaching meditation, art therapy, and many other tools like biofeedback. You have to find that support group the help you receive is wonderful. It's not in our heads So please listen to me, make noise. The love from asking for help is amazing PEOPLE DO BELIEVE YOU. YOU'RE ALONE ANY MORE. I LOVE YOU. I BELIEVE YOU.
Interested in sharing your own diagnosis story, treatment experience, or another aspect of living with lupus?
Who do you turn to first for emotional support? (choose up to three)