“Let’s hope it’s just cancer.”
“I bet she’s just faking to get attention.”
“Well, some girls are just more sensitive than others.”
“She is fine.”
“On a scale of 1 to 10, she said her pain was a 7, so it’s not too bad.”
“Just spend more time outside. Kids need more vitamin D.”
Those are just some of the dismissive things medical professionals said to me or my daughter over the years. Dismissing what she was going through was routine for a decade. It was maddening. Being told over and over again that nothing is wrong, you doubt your sanity.
Maybe it is normal. Maybe she was a throwback to the 1700s where girls and women fainted on a regular basis. But surely that happened because they were too tightly laced.
Maybe her being in so much pain that she could barely leave her bed was normal for someone with arthritis. Even when her joints were not inflamed.
Sometimes when she was having pain, her sister would put weighted blankets on her and make her warm, and keep the light low, because the light hurt her head. Other times she couldn’t stand to have even a sheet touching her. Was her level of pain normal? It didn’t seem so.
Being told that I should hope it was cancer was one of the most surreal experiences of my life. I am not violent, but I wanted to punch that doctor. Who says that to the mother of a 9 year old child!? Why would I hope she had a disease that could kill her and if it didn’t would result in her needing surgery, poisonous chemicals pumped into her blood stream or radiation aimed right into her, or more than one of those? I didn’t have the knowledge of cancer then, that I do now, but I had been with my grandmother through her first several chemotherapy appointments. How could you wish that on a child?
Perhaps though, there is something to that. If they had been able to find something common wrong with her, we wouldn’t have been dismissed, and she wouldn’t have been made to feel that her reality was unimportant. That her pain didn’t matter because it didn’t align with the easy diagnoses.
She had never been easy to diagnose. As a toddler she had had her first medical “event.” She was a perfect little chubby toddler. Happy and silly and curious, Then one day she started to cry. A pain cry. Nothing could console her. over the period of hours and then days her little body swelled up to the point that her finger and toe joints were purple, and her knees and elbows, red. We held her and sang, and rocked, and cried as she cried.
It is so hard to not be able to help. Just holding her in your arms & heart knowing there is nothing you can do. It was hard then & every time since. Seeing you child in pain. It isn’t for the faint of heart. Seeing her drop to the ground while going for a walk or while on stage, I don’t recommend it. It breaks your heart a little bit each time. Seeing her become more & more disillusioned with medicine, eats away at your hope.
When she “dropped” on stairs and was completely unresponsive, I called 911. That is what they teach you to do in all the first aid classes, and God knows I had been to enough of them. One a year since I was 16. The squad arrived & because she was still unresponsive, they took her in the ambulance & asked me to meet them there. In the squad she became aware of her surroundings, but still couldn’t move. The techs were talking about their theory that she wasn’t actually having an episode, she was just a teenager pretending to get attention. She didn’t tell me for years. When we got to the ER they look at her temperature, heart rate, and hydration…they find nothing wrong. “she’s fine.”
So, now when you go into the doctor or hospital with a pain complaint, they ask you to rank the pain from 1-10. I don’t think I have heard her rate it above an 8. An 8 was when all of her muscles locked up and she couldn’t move. The pain had literally locked her into immobility. That was an 8. Remember the story about when she was a toddler. Because of that, she knows that if she can talk instead of constantly crying, she can’t be at a 10.