To those who didn’t understand
CHAPTER 7
The those who didn't understand...
I know that you don't understand, I know that because you can't see it, it makes it harder to understand. If you don't understand, please ask. Most people with chronic illness or head injuries are willing to educate others on what it feels like and what it's like to live everyday with something no one can see. Cancer, also isn't visible to the naked eye; however, whether you fully understand cancer or not most people know someone who's had or is still battling it. Knowledge about cancer is also a lot wider spread nowadays, whereas chronic illness and head injuries are still somewhat a mystery to most. I can only speak to my experience because, like a lot of things, chronic illness and head injury symptoms manifest in completely different ways for everyone. In my case the head injuries came first and from those traumas emerged the chronic illness. I'm not a doctor so I can just tell you how I feel.
After my first head injury, I laid about a week and a half on the couch mostly blindfolded with earplugs in and no solid foods. When I had to get up to walk, I had to walk very slowly to minimize the shocks to my brain, from stepping too hard. I wasn't allowed to listen to music for 3 months, no TV, reading or writing for 6 months. After a month, off from school I went back but still wasn't allowed to read or write so I just sat in class like dead weight. In my school everyone moved a lot, never staying in one country more than 2 years at a time, so after a month of not being there no one really noticed I was gone. When I came back, everything was different, I was at school but not really in school because my participation was limited due to me not being allowed to read or write. After the first week people kind of lost interest, after all the "what happened?!" died down. I was just the girl who frequently missed school and made a big deal about her "headaches". Headaches is put in quotations because migraines, all while being extremely painful, are different than headaches you have due to a brain injury. My headaches are all different, sometimes they're due to pressure buildup in my brain, behind my eyes, light sensitivity, noise sensitivity, leaning my head on something, walking too hard, altitude, atmospheric pressure, my nutrition, the water I drink, smells, etc. The head injury also brought on other problems, aches and pains; such as, inflammation in the brain, neck and back, neck pain, back pain, rib pain, bone aches, muscle aches, intestinal pains, gut pain, pancreatic pain, gallbladder issues, etc. I don't sleep, maybe only 2-3 hours a night, sometimes none at all and on a goodnight, maybe 5. Although, when I'm in extreme pain, I pass out and then I can get 8 hours of "sleep", but I wake up in more pain and more tired than when I fell asleep. The chronic illness is the aftermath of the traumas caused by the brain injuries. It's hard to find people who understand because everyone's experience is different and most of the professionals only learn and read about it, they see it but they don't feel it. I've also noticed that people get angry when they don't understand and they tell you that maybe it's "just in your head" or ask “if you've tried Advil". People also often suggest I go see their doctor because "he's great" or that " I get it, I had the flu, it was so bad, like I was dying". Yes, having the flu is bad, but the flu ends and chronic illness doesn't have a timeline. You don't know if you'll be sick for 2 or 20 years, that's the hardest part. If you don’t understand, that’s ok, just believe us. Believe that our pain in real, and believe that we’re doing everything we can. You don’t have to understand, you just have to believe us.
That person with that sickness,
The one you didn't understand