I wasn't diagnosed with lupus until right after I graduated high school, so I haven't had any experiences with being in a flare while being in school. I start college in the fall, and was wondering if anyone had any advice on having lupus and attending school.
First, I just wanted to welcome you to the community-- this is a great place!! Some advice I can give you on having Lupus and going to college would be:
Time management-- It may take a while to get the hang of this while you're determining what works best for you and since I don't know your level of fatigue; but I found it easier to try and get my school work done early to try and go to bed as early as I could. Another option I would sometimes do is nap and then the school work. Also with scheduling classes, I found it easier to create my schedule so that I would have a majority of my classes on a Tuesdays&Thursdays schedule or a Monday, Wednesday&Fridays schedule so that I would just be super tired on those days and had a couple of days in the week to catch up on rest or my school work. Or you can spread your classes throughout the week so that you have shorter days at school. Also to save you some time and energy, look into online classes, which many schools provide now, especially for pre-requisite classes.
Disability Services-- I know it sounds totally unattractive, but I did not do this in school because I started off my college career great, but did hit a huge bump in the road one semester and feel like if I followed through with this, it maybe could've lead to a different outcome... But most colleges now have disability services, it might be under a different name. But definitely look into that, because it will help you whatever it may be, such as extra help,extra time for tests and other school work, and helping your professors understand what you may be going through.
Communicate-- Let you teachers know of your situation in advance. At my school, many of the teachers sent around a note card on the first day of class and one of the things they wanted us to write on it, was if there was something that might affect my school work and needing extra help, and I always wrote that I have Lupus. Informing your teachers just gives them the heads up just incase you happen to get sick and end up missing a lot of school time or any other type of situation that might pop up.
Hope some of this helps! If I think of anything else, I'll definitely leave it up here for you!
Similar to what lynn4545 said...we all have different symptoms but college is very stressful and I don't say that because I want to scare you but stress does take its toll. I've had a hard time earning my degree for other reasons beyond lupus but when I was diagnosed at 22 it made it that much more difficult. My best advice is to pace yourself. You will quickly learn what you are able to do and what you are not able to do. It's hard because I'm the type of person who sees a B as unacceptable. You're surrounded by many gifted/talented people so obviously you want to go above and beyond when it comes to fulfilling your potential. Push yourself just not too hard and don't compare yourself to anyone else!
The journey you take through college is a HIGHLY personal one. I'll be graduating in the fall. It took me 10 years, 2 schools (actually 3 for some online classes), several majors, and many failures to achieve success. The biggest waste of my time was when I was comparing my failures to others "traditional successes."
Register with Disability Support Services, talk to your teachers before the semester starts, advisor, etc.
Hope that helps, good luck!
I just want to add: you don't need to finish a semester during which you're having a flare that's severe enough to make school near impossible. It doesn't make you a failure, and to be honest I think it's better to go on leave and take the classes again than to let lupus bring down your GPA. However, this isn't something to do if you're going to get a B in a couple classes. I had to go on leave from my first semester because I would have failed nearly all of the classes I took.
With Disability Support Services make sure to ask them *exactly* what needs to be in a letter from your physician(s) and don't let them be vague. Otherwise you might get stuck in a back and forth trying to get everything the way Support Services wants it to be.
Email your professors before classes start to let them know you have a disability that is unpredictable and can significantly effect your academic output. Usually, they'll want to work with you. Feel them out before the drop date because some professors have no sympathy for invisible illness. I had a professor who didn't care about my illness at all even when I would show up to class looking like I was half dead (my classmates, some who I didn't even know that well, would come up to me to express their concern) and gave me no slack whatsoever when I was going through a period of horrible chronic migraines that were triggered by artificial light.
I don't want to sound preachy, but there are a few areas that i think are critical:
sleep sleep sleep. make sure, no matter what is going on, that you sleep a full night each night. for me, i can sleep crappy one night and feel the difference. thinking back to college, there were many reasons and many a night that i pulled all nighters or slept very little. i was diagnosed way after grad school. i think it's critical that you get enough sleep. to me, it is one of the main things. be careful of UV rays (sun, as well as fluorescent lights--people have different sensitivity, but if i were under fluorescent lights for a full day, i would develop a malar rash and it would kick up the disease). try to eat well (another thing i didn't do in college). people experience different things with food in general. and its so individual that it would be hard to recommend something specific. but be aware of what you're eating and how you feel. i keep things jotted down in my planner. if i have specific pain one day--i write it in there and surrounding details including what i ate, sleep, weather, etc. i developed some insight into foods i couldn't eat, and lots of other helpful stuff that was specific to me.
also, with lupus fog, i had my doc prescribe a stimulant for me--ritalin or something like that--since it doesn't have to build up in system like lots of drugs--you can use it only as you need it. i have found it helpful for the days i cannot miss, but i am too foggy to be productive.
enjoy the rest of your summer and good luck in school!!! i hope some of this might help :)
dawn
Thank you very much for all of that information! So far I have contacted my school's disability services and the woman I spoke with said she would do as much as she could to accommodate my needs. I also plan on letting my teachers know that I have lupus, just in case something were to happen, like you said. I had already created my schedule before I got lupus, so I'm really hoping I have enough energy this semester. However, I am definitely keeping your advice in mind when I create my schedule for next semester!
lynn4545 said:
First, I just wanted to welcome you to the community-- this is a great place!! Some advice I can give you on having Lupus and going to college would be:
Time management-- It may take a while to get the hang of this while you're determining what works best for you and since I don't know your level of fatigue; but I found it easier to try and get my school work done early to try and go to bed as early as I could. Another option I would sometimes do is nap and then the school work. Also with scheduling classes, I found it easier to create my schedule so that I would have a majority of my classes on a Tuesdays&Thursdays schedule or a Monday, Wednesday&Fridays schedule so that I would just be super tired on those days and had a couple of days in the week to catch up on rest or my school work. Or you can spread your classes throughout the week so that you have shorter days at school. Also to save you some time and energy, look into online classes, which many schools provide now, especially for pre-requisite classes.
Disability Services-- I know it sounds totally unattractive, but I did not do this in school because I started off my college career great, but did hit a huge bump in the road one semester and feel like if I followed through with this, it maybe could've lead to a different outcome... But most colleges now have disability services, it might be under a different name. But definitely look into that, because it will help you whatever it may be, such as extra help,extra time for tests and other school work, and helping your professors understand what you may be going through.
Communicate-- Let you teachers know of your situation in advance. At my school, many of the teachers sent around a note card on the first day of class and one of the things they wanted us to write on it, was if there was something that might affect my school work and needing extra help, and I always wrote that I have Lupus. Informing your teachers just gives them the heads up just incase you happen to get sick and end up missing a lot of school time or any other type of situation that might pop up.
Hope some of this helps! If I think of anything else, I'll definitely leave it up here for you!
Thank you very much for your advice, it does help knowing I'm not alone!
MT411 said:
Similar to what lynn4545 said...we all have different symptoms but college is very stressful and I don't say that because I want to scare you but stress does take its toll. I've had a hard time earning my degree for other reasons beyond lupus but when I was diagnosed at 22 it made it that much more difficult. My best advice is to pace yourself. You will quickly learn what you are able to do and what you are not able to do. It's hard because I'm the type of person who sees a B as unacceptable. You're surrounded by many gifted/talented people so obviously you want to go above and beyond when it comes to fulfilling your potential. Push yourself just not too hard and don't compare yourself to anyone else!
The journey you take through college is a HIGHLY personal one. I'll be graduating in the fall. It took me 10 years, 2 schools (actually 3 for some online classes), several majors, and many failures to achieve success. The biggest waste of my time was when I was comparing my failures to others "traditional successes."
Register with Disability Support Services, talk to your teachers before the semester starts, advisor, etc.Hope that helps, good luck!
I'm so sorry to hear about your professor treating you that way! I don't have my teachers emails yet, but I do plan on letting them know about my condition as soon as possible.
LMidg said:
I just want to add: you don't need to finish a semester during which you're having a flare that's severe enough to make school near impossible. It doesn't make you a failure, and to be honest I think it's better to go on leave and take the classes again than to let lupus bring down your GPA. However, this isn't something to do if you're going to get a B in a couple classes. I had to go on leave from my first semester because I would have failed nearly all of the classes I took.
With Disability Support Services make sure to ask them *exactly* what needs to be in a letter from your physician(s) and don't let them be vague. Otherwise you might get stuck in a back and forth trying to get everything the way Support Services wants it to be.
Email your professors before classes start to let them know you have a disability that is unpredictable and can significantly effect your academic output. Usually, they'll want to work with you. Feel them out before the drop date because some professors have no sympathy for invisible illness. I had a professor who didn't care about my illness at all even when I would show up to class looking like I was half dead (my classmates, some who I didn't even know that well, would come up to me to express their concern) and gave me no slack whatsoever when I was going through a period of horrible chronic migraines that were triggered by artificial light.
Thank you very much for your advice! I do have trouble sleeping sometimes, and sometimes I take a Tylenol PM but I'm worried I'll feel like I need one to sleep every night so I try not to use them too often. I have also noticed a difference in foods that I eat and symptoms that I have, so I am definitely going to try my best to start eating better!
dawn said:
I don't want to sound preachy, but there are a few areas that i think are critical:
sleep sleep sleep. make sure, no matter what is going on, that you sleep a full night each night. for me, i can sleep crappy one night and feel the difference. thinking back to college, there were many reasons and many a night that i pulled all nighters or slept very little. i was diagnosed way after grad school. i think it's critical that you get enough sleep. to me, it is one of the main things. be careful of UV rays (sun, as well as fluorescent lights--people have different sensitivity, but if i were under fluorescent lights for a full day, i would develop a malar rash and it would kick up the disease). try to eat well (another thing i didn't do in college). people experience different things with food in general. and its so individual that it would be hard to recommend something specific. but be aware of what you're eating and how you feel. i keep things jotted down in my planner. if i have specific pain one day--i write it in there and surrounding details including what i ate, sleep, weather, etc. i developed some insight into foods i couldn't eat, and lots of other helpful stuff that was specific to me.
also, with lupus fog, i had my doc prescribe a stimulant for me--ritalin or something like that--since it doesn't have to build up in system like lots of drugs--you can use it only as you need it. i have found it helpful for the days i cannot miss, but i am too foggy to be productive.
enjoy the rest of your summer and good luck in school!!! i hope some of this might help :)
dawn