Not Contagious, Yet Not Well
A few weeks ago, my son was really tired even though he just woke up. I had fears that this was going to be a weekly function, but since he started at a new school in January, he’s had medications under control that actually have kept him in better attendance, thankfully.
I called him out of school and told him to go back to bed because sending a child with sleep disorders to school when excessive daytime tiredness at its extremes = zero learning opportunity.
A stream of texts and emails from the school
I thought the messages were clear, especially since this school specializes in children that have medically necessary individualized education plans (IEPs), so I would send him to school the next day.
The rest of the day was a fairly significant stream of text and email messages trying to clarify why my child needed the sleep and that he did not have some kind of contagious disease requiring testing.
Frustrated with constant questioning
In a global pandemic, where a sneeze incites an immediate requirement to quarantine, I find this world even harder to traverse given both mine and my child’s narcolepsy as well as other sleep disorders, allergies, and other co-morbid mental health disorders.
Though in almost constant quarantine, vaccination of myself and my child (as soon as allowed), the constant questioning of whether I have sniffles, tiredness, or anything else that could fall into a category for symptoms of a contagious viral infection has left me frustrated.
Heightened panic vs chronic health conditions
Honestly, I just have to remind myself to respond "no" regardless of the “correct” answer. It was just more difficult with the school my son attends, though. Even with his diagnosis documented with the school of having sleep apnea and idiopathic hypersomnia, the complete lack of understanding of my son’s medical conditions is severely frustrating.
I have compassion for the teachers and administration trying to protect the school population from illness and another closure/quarantine situation. Yet, even with a clear explanation that this is related to his chronic medical conditions, it seemed panic was still heightened by taking a day off of school.
There's already enough on his plate
Let’s be clear, my son is not feeling well most days. Teenagers with sleep disorders also tend to be more moody than a parent would like. He’s often distracted, unfocused, and especially frustrated with other people who talk about being tired but don’t understand what it’s like to wake up with a pain in one’s head from lack of sleep and/or oxygen (especially when the allergens are high).
Loud sounds tend to make things worse, but he gets his coffee, heads to school despite the frustration of his peers, and has finally been making good grades while not being overwhelmed by the daily tiredness that ensues.
A call for education on chronic health illnesses
We have had scares of viral exposure, an increase of social isolation due to the constant concern that getting sick would be even worse than the mental impact, and overall have been cautious when the state of our health changes to ensure others' safety.
I recommend, though, that we continue to educate others on chronic health illnesses such as narcolepsy and sleep apnea. Despite documentation and discussion, my son has faced immense challenges explaining to the school district in general (of all people I would think would attempt to learn more) what it means to be unwell but not visibly sick.
Even if it’s not a measurable disease or communicable, he’s not feeling well. Hopefully, things will improve as we handle unforeseen challenges in the future, but at least they know for today proceed as normal as possible.
Where are you in your narcolepsy diagnosis journey?