This topic can be broken down into high school and college for me since I have been sick since I was 16 years old. High school was hard for me because I was trying to get control and understand what I was facing....years of pain and well, (this is cliche but) heartache.
In high school, I missed a lot of days and still managed to successfully accomplish everything I wanted to. I was lucky enough to have a school nurse who was so understanding and helpful. I had what was called a 504 plan which is the equivalent for a person with a chronic illness to an Individualized Education Plan for a person with a learning disability, etc. Basically, the 504 was a how to when I'm sick. It told my teachers: how long I had to finish assignments, what to do if I had a stroke during class, and any other accommodations I would need. But I missed out on a lot of my high school experience. I stayed home most nights and didn't really have fun with friends until after graduation.
When it came to college, I really wanted to attend a university that was a few hours from home. Realistically, I couldn't have done it then. My illness was too out of control and I wouldn't have made it without my family's help. So I relented and went to a community college close to home. I was dreading going to this school but I loved it and miss it! The instructors were amazing and understanding and the sense of community was wonderful. Luckily, we moved right before my sophomore year of college and I was right in the middle of the school I was going to and the school I planned to attend after graduating. Driving wouldn't be an issue and I would live at home for the rest of my college experience.
The things that really helped my college experience was Vocational Rehabilitation and disability services. Voc Rehab is a program that enables people with disabilities and illness go to school by paying for part of their tuition. Because of the severity of my Lupus and APS, I was accepted right away and they have paid half my tuition throughout college. This doesn't take a lot of work on my part. Both colleges I've gone to have had Voc. Rehab counselors who I met with once per semester to touch base and make sure everything is going smoothly.
Disability services was an entire department in college #2. In number #1, it was one woman who was so helpful! The process at both schools was pretty much the same; the only real difference, at number #2, more paperwork...of course. I would fill out papers for each of my classes that consisted of my need for extensions in some areas when I was sick. In my four years of college, a dozen or so flares and countless bad, bad days, I missed one assignment! This semester I didn't even fill out paperwork (cause I forgot...brain fog). The bad part is that I have to talk to all my professors individually to explain the paperwork. I had to start the semester with a new person telling them I might be gone for two weeks worth of class. College professors don't like to hear that but they need to know right away so they can make accommodations for you!
My advice to my Lupus peeps (and anyone with a chronic illness) in college is to get some reliable contacts...I will always be thankful for that nurse who told me about vocational rehabilitation! Most likely your campus will have a disability service, make an appointment. In my experience, they are so willing to help! Be advised: they will likely require documentation of your illness. I wrote a quick email to my hematologist who wrote a short letter and sent it to the college.
Good luck on your college journey!
Personal update: School is done! I finished everything without staying up til all hours of the night like my college counterparts who might need to learn to prioritize! Oh, and I'm going to be an aunt! My sister and brother in law who have been trying for years to get pregnant just found out!
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