“I’m scared.’ I shook and started crying from the sharp pains. My hand cramped up; I couldn’t open it anymore. ‘I’m here, and I got this, and I got you.'”
‘I see blood on me, but from where?! It’s 2:15 a.m. now, and I’m crying in the bathroom. I don’t like hurting out loud. What was this doing to us?’: Woman struggles with ‘mental hurricane’ during undiagnosed illness
‘I was choking on my own saliva. I thought my life was over. Alex was laying on my face crying and I could feel his tears running down my face.’: Autism mom with lupus describes difficult journey, ‘The thought of not being with him haunts me’
“One by one, I will lose all ability to speak and move. I will lose mobility at an age that is way too young. It will take away from the joy I share with Alex, which is already limited and unfair. In the worst part of my life when I was physically sick and could barely walk, I was given the greatest gift of my life.”
‘It’s not that bad, be grateful.’ Our pregnancies can’t be rescheduled. These are memories we will never get back.’: Expecting mom says ‘none of us asked for this, but we will all come out of this stronger’
“This is not the time to ‘suck it up.’ This is the time to own every feeling of weakness and uncertainty we have, and move forward in spite of it… together.”
‘I’m not sick. Why should I stay at home?’ As a mom of 4 in her second trimester, I plead with you, wash your hands. My husband doesn’t want to raise our family alone.’: Mom of 4 diagnosed with lupus begs people to stay home
“As someone who has battled lupus for the past 16 years and remains on numerous immune-suppressing medications, I urge you to stay home. We know what it feels like to get sick because of someone else’s lack of concern or ignorance. My husband doesn’t want to raise our family alone.”
‘When you see me in a handicapped parking spot, you roll your eyes. My husband explains, ‘She doesn’t get better from this. She ultimately dies from it.’: Woman with multiple chronic illnesses urges ‘not all disabilities are visible’
“When you see me in a handicapped parking spot, you might glare. You may even be like those who have said something rude or left a nasty note on my windshield. I sport titanium rods and screws that go from the base of my head to my mid-back. You wouldn’t know by looking at me I have a terminal illness.”
‘So she’ll always be sick?’ I leave the office with an answer but no cure. ‘I’m not dying. I’m just 16 and past my prime.’: Chronic illness warrior battles lupus and fibromyalgia
“’Maybe if I drank bleach,’ I think. I feel so dirty, tired and stiff. ‘Maybe if I turned inside-out and scrubbed my veins out with soap.’ Surely the disease would be eradicated. I’m supposed to find out today. I tap my foot. ‘Remember to breathe, you have to breathe, just breathe.’ Dr. Box settles into his rolling chair. ‘So she’ll always be sick?’ ‘Yes, but we caught it early.’ Yesterday, I dropped my hairbrush. I couldn’t finish. My hair is still knotted in the back. Last week, I passed out briefly, stepping out of the shower. And this was an improvement.”
‘What will you tell your kids? They look trashy.’ I’ll tell them what my tattoos mean to me.’: After lupus diagnosis, sexual assault survivor uses to tattoos to ‘help me reclaim myself’
“Unsolicited, I have been ‘advised’ on my body art. I’ve been asked, in horror, ‘What will you tell your kids?’ I’ll tell them what my tattoos mean to me, and when they’re older, they can get tattoos if they want them. ‘You’re inviting people to judge you.’ Actually no, I’m not. ‘Can you get a job with those?’ Firstly, none of your business. Secondly, yes. Then there are the people who find my tattoos TOO appealing. ‘Where ELSE are you inked?’ ‘So, you like pain, huh?’ ‘Wanna see MY tattoo?’ Seriously, be less sleazy.”
‘I was not a virgin. BUT I was in my own home. I took my rape and buried it. For 21 years.’: Teenager raped at her own party in high school says she was a ‘broken spirit,’ but learned to ‘survive, be strong’
“When I was 18, I threw a party at my house. I convinced my parents I was grown enough to stay home alone. Enter the sweaty keg in the living room that left a ring on the floor permanently. And the collection of teddy bears my mom kept in the living room drowned in the pool. It was devastating. That night I drank too much and let people I thought were friends, destroy parts of my childhood.”
‘I didn’t feel sick, I didn’t look sick. Yet, my body was attacking itself AND my baby.’: Woman’s ‘leg swelling’ dismissed as ‘old age’ at 33, later diagnosed with Lupus
“My family and I were on our way to a cruise vacation when my doctor called, asking me to come in. ‘I don’t think you should go on that vacation,’ he said. What the heck?! Oh no, I was going on vacation! Then, he gave me a quick and dirty update on my situation. I felt like I was in a dream state. I started to cry. I pride myself on being very strong and independent, but in that moment, I was TERRIFIED. I wasn’t sure I’d be around to see my children grow up.”
‘I love when you are healthy, and can play with me,’ my son said. That CRUSHED me. I was forced to observe my son from a distance, watching his life from afar. I couldn’t join in.’
“When my husband and I decided to have a second child, crap hit the fan. I felt like a failure, yet nothing was ‘officially’ wrong with me. I would overdo it just to show him I was a good mom. I would regret it later.”
