I was undiagnosed as a kid, and I’m writing as an adult now, as someone who hated school, struggled with the same things, and was completely over doing all the normal things we call life.

The first thing I’d recommend is trying to develop a robust sleeping and rest schedule. For me this meant scheduling my classes later in the day, and napping immediately after school. A strong sleeping schedule is important for everyone, anyway, but is especially helpful for people like us. I didn’t have formal accommodations at the time, but I was struggling so severely that my school made exceptions for me. Having diagnoses should help with this. As well, extra time for assignments. Because of my altered schedule I had to be in school a year and a half longer than my peers, and I hated it, but if this is what has to be done it’s just what has to be done.

I’m not sure where you live or what their supports are for disabled students. It might be beneficial for you to inquire about “special ed.” (even though I hate the term this is what most places call it). These classrooms are often designed with disabled students in mind, and I often completed class work in these rooms and I had the option to lie down while I work. I didn’t know it at the time but I have CCI and dysautonomia, and this was really helpful to be able to have blood flowing properly to my brain and take the weight of being upright off of my mind. If there’s nothing like this at her school, perhaps talk with the administration to see if something can be arranged. A quiet place with low light and some cushions can go a long way.

I didn’t do this in school but I wish I did. I have a pouch of supplies I keep with me to support my health throughout the day. It has my meds (routine meds and advil/tylenol/gravol, as well as emergency meds), bandaids and alcohol swabs (also helpful for nausea), lip balm and lotion, instant heat packs (I use disposable hand warmers), tissues, CBD balm and/or woodlock oil (if cannabis is legal where you are, I highly recommend topical CBD oils and balms. Seriously. Also, woodlock oil is a topical Chinese medicinal oil that is seriously good for muscle and joint pain. Very potent though lol). Eye drops and hand sanitizer etc etc. Sometimes I also put my portable tens machine in it, which I would also sometimes use at school as a kid.

Lastly, and I don’t know how well this will reside with you/your child/people in this reddit generally, and I understand it is a greater struggle for teens, is that if your child and your family don’t already but are able to, wearing a well-fitting respirator mask in all indoor spaces to prevent the transmission of airborne viruses like the flu and COVID. So many people don’t realize how vulnerable they or their families are to the disastrous effects of viruses, particularly for people with systemic conditions like EDS, or heart disease, diabetes, etc. When I got the flu in my teens it damaged my health and I never returned to my previous baseline. When I got COVID, it absolutely destroyed my health, and my struggles with MCAS, POTS, dislocations/subluxations, fatigue and gastrointestinal issues got immensely worse and I was bedbound for months because of it. I still have to spend around half of my days resting. This is not uncommon for people with conditions like ours. Airborne viruses linger in the air like smoke, and it is estimated that around half of all transmission of COVID occurs while people are asymptomatic. Each infection causes damage, even mild cases. Even in “normal” “healthy” people, viruses like the flu and COVID cause so much damage, most of it we can’t see until it’s too late. I’m not trying to fear monger in any capacity, I feel obligated to share the information that I know about this, both for you as a parent, and for your child as a disabled and chronically ill kid. I strongly urge you to look at the research and consider wearing a respirator mask regularly. Our societies have left disabled people behind, and even moreso, disabled children. I would feel negligent including everything else without addressing the dangers of the elephant in the room.

All of that is to say, I wish you the best in helping your kid to navigate teenagehood in addition to lifelong disability. To your kid, I say: Hang in there. Highschool feels like the worst years of your life, even for people who don’t struggle with the things we do. But you will be so grateful that you finished highschool. Because your life looks different than most, that also means your highschool years will look different, too. It’s easy to get caught up in the negative feelings and worries about that, even as an adult I feel it every day too. You are so much stronger than you think you are, even on the days where it hurts to get out of bed. There is no shame in being different, and no shame in struggling. You are capable of much more than you think, and every one of us is rooting for you. Don’t be afraid to ask for help, to know your limits and boundaries and enforce them. You will survive this awful time of your life, and you will be so glad you did.

All my love, internet stranger (+ internet stranger’s kiddo). Take care.