Suuuper late, but seeing as your question was asked 11 hours ago, maybe I could shed a bit of light?
I'm a 19yo male with too many chronic problems to list, almost all stemming from hereditary pancreatitis and the operations attempting to fix it. My particular kind of pancreatitis is caused by a gene called PRSS1 that mutates the organ itself, causing it to become severely damaged. I have been dealing with this and the extreme pain it causes since I was 6 months old, with my first major surgery at 18 months.
I think a HUGE misconception about Peds patients is that 99% of the time, if your kid keeps telling you they feel terrible, they do. If your child has a chronic illness, they sure don't want to have to miss seeing their friends, but they also don't feel feel anything close to being able to sit in a hard chair at a desk and do schoolwork. Invisible illnesses suck hard. I can't tell you how many times I've been accused of lying, even by doctors.
Another is that when we sleep late into the day and spend the rest of the time doing nothing, that's our way of coping. And it works, about as well as anything else can. On sleeping so much: Why would we want to spend any more time of our difficult lives conscious when we feel like utter crap the time that we already are. A lot of meds make people sleep a lot, especially when you take handfuls of different ones at a time. A third reason for all the sleep is that, simply put, being sick is exhausting. Some days I'm only awake for 5 or 6 hours of the 24, if that.
We aren't just being sullen, dramatic teens- our lives really and truly are hard- most of all for emotional teens like ourselves.
I hope I was able to help at least a little bit by providing our perspective :)
Alphapanc025 karma
Suuuper late, but seeing as your question was asked 11 hours ago, maybe I could shed a bit of light?
I'm a 19yo male with too many chronic problems to list, almost all stemming from hereditary pancreatitis and the operations attempting to fix it. My particular kind of pancreatitis is caused by a gene called PRSS1 that mutates the organ itself, causing it to become severely damaged. I have been dealing with this and the extreme pain it causes since I was 6 months old, with my first major surgery at 18 months.
I think a HUGE misconception about Peds patients is that 99% of the time, if your kid keeps telling you they feel terrible, they do. If your child has a chronic illness, they sure don't want to have to miss seeing their friends, but they also don't feel feel anything close to being able to sit in a hard chair at a desk and do schoolwork. Invisible illnesses suck hard. I can't tell you how many times I've been accused of lying, even by doctors.
Another is that when we sleep late into the day and spend the rest of the time doing nothing, that's our way of coping. And it works, about as well as anything else can. On sleeping so much: Why would we want to spend any more time of our difficult lives conscious when we feel like utter crap the time that we already are. A lot of meds make people sleep a lot, especially when you take handfuls of different ones at a time. A third reason for all the sleep is that, simply put, being sick is exhausting. Some days I'm only awake for 5 or 6 hours of the 24, if that.
We aren't just being sullen, dramatic teens- our lives really and truly are hard- most of all for emotional teens like ourselves.
I hope I was able to help at least a little bit by providing our perspective :)
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