Emily speaks for me, and for a lot of people. College is often a huge transition out of our parents’ home and into our independent lives, which can be stressful. For those of us who are chronically ill, or worse, are yet undiagnosed, college and dorm life can seem daunting. But I don’t have all of the answers. This time, I asked my faithful readers how to handle college and chronic illness, and their advice is pure gold.
Tammy F is a Mom of an EDS college student who said this:
“Meghan doesn’t have much to worry about, while she has EDS it is manageable by her and we have not had to call on other resources. I would definitely recommend talking to the colleges health clinics to see what they can do, talking to administration to see what accommodations they can make, having the child talk to their advisor (they are their biggest advocate while they are there). Just pulling as many resources around the child(ren) as possible! Most healthcare providers have at least heard of EDS now which will work toward everyone’s benefit. One thing I recommend is getting with a mental health counselor quickly too. It may have to be someone off campus but, just having that resource I feel would be crucial. Meghan has started with a counselor this semester and I had been pushing her for over a year to find one. Becoming an adult is hard no matter who you are so someone to talk to who isn’t mom or dad is key.”
Tracey O: “I…have a child with ADD/anxiety issues. When he was in middle school/high school, he didn’t know how to take a little joking and became bullied a lot. He also had anger issues and I really worried about hence was going to survive at college/a roommate and deal with his issues, keeping up on studying. First semester was an adjustment because he took an honors calc class that moved too fast. The last few weeks of the semester were very rough – I thought he was losing it (depressed, low self esteem). Luckily he is 20 minutes away and was able to come home some, or I could go down there and talk to him and get him calmed down and now so upset and feeling bad about himself, his grades. He ended up with a “c” (believe me I would have been jumping for joy if I had a c in honors calc). Now he is in his second semester, and back to all high grades, planning his schedule better, getting help when he needs it. He also has been doing rock climbing and bouldering (scares the crap out of me) but high risk behavior goes with ADD. It actually has helped him and he is off his meds. I guess high risk hobbies release chemicals to the brain that can have the same effect as meds.
As far as roommates, all 3 of my kids have been matched up with fantastic roommates/suite mates. Luckily, all of my kids have made some lifelong friends with their roommates. It seems like people are matched up better than when we were in college because that really scared me also. All my kids disliked high school and the immaturity that went with it. They all thrived in college. None of them have been more than 45 minutes away, and have lived on campus. Hope things go great for your kids when they go off to college! Also, many colleges have a disability services department. Talk to them before deciding on a college to see what services are available to assist with needs of the kids. And I was oblivious to it with my 2 oldest, but with my son, I wish I would have found out more so he could have got help before he started flipping out. He also works in disability services to administer tests for those who need extra time taking them. His college also has a department called “Center for Student Progress.” Services are offered to students to help them succeed in college – they offer scheduling and time management help, direct them to tutoring, and can answer questions about the college experience that a new student may have.”
Jill S: “I have an EDSer in college. She has had some challenges, but she goes to school almost 1000 miles away and is finishing up her Junior year. She has been very successful. Not going to lie, it seems that every single semester has brought on some new weird thing/diagnosis. I think she would say one of the hardest things for her is the “invisibility” of EDS/POTS. She has some close friends that get it, but early on, even her closest friends seemed to think she was a hypochondriac. They’ve lived through enough of it with her now that they get it though. She has always lived in an older dorm with community bathrooms, and has always had a roommate (by choice, she does NOT want to live alone) and I would say that has not been great for her health. We both think her health would have been much better without exposure to all the extra germs that come with that bathroom/older dorm (and no a/c) situation. Also, if I had to do it again, we would have established a relationship with a primary care dr (who understands EDS) in her college town. By the time we realized we should have done that, she was finishing her sophomore year and it didn’t feel worthwhile by that time. However, still regretting that decision! And additionally, she has Raynauds, and the cold climate is not the best for her at all – gloves with handwarmers are a necessity!”
Megan H: “I think that no matter what your issue is, visiting a potential college is important. The woman who wrote the article talked about fitting in when everyone wanted to go out and drink. Probably from the get-go, you want to avoid a school with a known reputation for these things. When you visit, ask what clubs and extra-curricular activities are available. If it’s a short list, you’ll have difficulty finding a social life apart from partying. Also, if there is a large commuter population, you’ll find that there are older students who may be past the party days and just want to attend class and maybe grab a bite to eat with a classmate.”
Shannon F: “We’ve been blessed… my daughter’s roommate also has a chronic condition. So they TOTALLY get each other! Probably you should see if the college will match up people who are living with/ have lived with a chronic pain condition. On the plus side… they are understanding and tolerant of bad, painful days. On the minus side, if both of them are experiencing episodes, there is no “useful” person around to run to the car and grab dinner, etc. It helped that BEFORE we got to the school, Ta was talking with the student advocate they assigned her so she understood what accommodations could be made as far as housing, how much typing/ writing she had to do, getting the path in front of HER dorm cleared of snow first before the other dorms (so she could use her mobility scooter). TALK to the college. Let them know your child does need accommodations. (It helped that I was an alumni, and I could pull some strings with my connections, as well!)”
Alisha M: “So as someone who has EDS and has been in college forever now, I can tell you a couple thing that have worked and haven’t worked. First, visit your campus! I washed out of the University of MN when I was younger. A big chunk of that (because, you know, hindsight) was that I couldn’t get to classes. The Twin Cities campus is HUGE. Even if I did make it to class, by the time I did get settled into lecture I would fall asleep or zone out. Add in a heaping helping of anxiety and some heavy ass textbooks and things would get ugly fast. In retrospect I wish I had talked to the campus accommodation people. Though I’m not sure how much they would have done.
I never lived on campus, just because I like privacy and really didn’t dig the idea of a dorm. (Also, at the time my mom was dating her now husband and wasn’t home much anyway. So I pretty much had the house to myself anyway.) Since I had been interning for a local radio station since I was 16 (I do not recommend that any sane parent allow that BTW.) I was a veteran partier, and was kind of over it. I wouldn’t say it was very hard to make friends that were more low-key and enjoyed hanging at the coffeehouse or movie nights.
I loved taking classes at our community college. It was a good transition for me because I had been out of school for 5 years and there were more resources for students with different kinds of lifestyles. It was also nice because I was able to actually connect with my professors on a more personal level. They were more understanding and more willing to make accommodations for me if I missed a class.
Now, since I had to transfer back into a big girl university i take classes online. I do like taking classes online, however, it requires a fair amount of discipline. The flexibility is more than worth it though. At UND, the classes are the same ones that the on campus kids take (recorded in the morning and posted in the afternoon). I’m fairly sure that you can get access to recorded lectures even if you’re an on-campus student, so if you can’t go to class, you can still watch it. Or you can catch up when you’re feeling better.
All my textbooks are now online. Actually, I have a Note tablet, so most of my notes are online too. That means I don’t have to carry much more than my laptop, my tablet, charger and power brick. Not only are the books generally cheaper, but there’s usually some study advantage built into the apps. (I’m a huge fan of Kno.) And since I use One Note for my note taking I can study on my phone whenever I have a moment.
[Your children] will have a huge advantage in that colleges have had to adjust to nontraditional students. Even the Chemical Engineering program at the U of MN that told me flat out ‘No’ because I had a husband and kids is now putting together a distance program.”
Do you have a child in college who manages a chronic condition? Please tell us what has (or hasn’t) worked for them in the comments section!