National Invisible Chronic Illness Awareness Week

Going Back to School When You Have a Chronic Illness

Lynn C. Royster, Ph.D.
Director of the Chronic Illness Initiative
at DePaul University's School for New Learning

This is a unique program designed to help chronically ill students obtain a college education. In addition, she designs and teaches courses in conflict management, adult psychology, and writing.

Dr. Royster also serves as Vice Chair of the CFIDS Association of America, Inc. and as Board Secretary of the Chronic Fatigue Syndrome, Fibromyalgia, and Chemical Sensitivity Coalition of Chicago. She received her B.A. from the University of Michigan, her M.A. from Prescott College, her J.D. from George Washington University, and her Ph.D. from the Union Institute and University.

She has two grown children, one of whom has suffered from a chronic illness for over twenty years, and lives in Chicago with her husband, Michael Royster.

Visit her website

Going Back to School When You Have a Chronic Illness

Clarisse: Welcome to the National Invisible Chronic Illness Awareness Week seminar. My name is Clarisse and I will be your host for this hour. I will make a few announcements then our guest will present the topic, after which will be a question and answer period. Now, I'd like to introduce to you our special guests.

Lynn C. Royster, Ph.D. is Director of the Chronic Illness Initiative at DePaul University's School for New Learning. This is a unique program designed to help chronically ill students obtain a college education. In addition, she designs and teaches courses in conflict management, adult psychology, and writing.

Paula Kravitz is Assistant Director for Student Services at the CII and the Special Advisor for our students. She has a background in social work.

Welcome Lynn and Paula.

lroyster: Welcome!

pkravitz: Hi everyone!

lroyster: We're glad to be here. I'm going to post some information first and then we'll talk.

Going back to school with a chronic illness can be stressful even to contemplate, let alone do. Students who find themselves in this circumstance need to prepare carefully, both practically and emotionally, and engage support systems ahead of time to ensure that the term will go smoothly.

There are several issues that we might talk about today. Some are:

- Coping with denial. "I'll be fine. I'm feeling better. This time, I'll make it through the whole term."
- Taking care of yourself - really taking care of yourself.
- Avoiding perfectionism
- Discussing your illness and accommodations needed with your instructor - who to tell how much?
- Discussing your condition with other students. When and how?
- Tactics for success: choosing appropriate courses, working ahead, prioritizing, etc.
- Support Systems: family, advisor, counselor
- Advocating for yourself
- Handling the bureaucracy.
- Finding a path between the extremes of over-responsibility and under-responsibility.

lroyster: At the Chronic Illness Initiative at DePaul University, both Lynn (the program Director) and Paula (the Asistant Director for Student Services) work daily with students facing these issues, Paula in her role as Advisor, and Lynn as both a CII staff member and a professor who has seen several students manage their illnesses well or badly during a course.

We can talk about these in turn, or, if someone has a particular concern, we would be happy to focus wherever you would like. If you have specific issues not covered here, please feel free to raise them.

Perhaps we could start with the first one: coping with denial. We find that many of our students expect much more of themselves than they can reasonably accomplish. Denial seems to be a part of many chronic illnesses. We try to encourage students not to take so many classes or involve themselves in too many outside stressful activities during the term.

Is this an issue that you would like to talk about, or is there something else you'd like to focus on?

pkravitz: Has anybody thought about going back to school but just feels their illness is too difficult to manage and go to school at the same time?

heybeth: Do you have both undergraduate and graduate degrees?

lroyster: We offer both BA and MA degrees.

gloryb: I'd like to hear what you have to say about who to tell and how much.

lroyster: Well, that's quite a difficult question, but you have to think about how well you know the person - can you trust them to honor your privacy? You have to think about their "need to know." You also have to think about the possible effects on you and the other person.

pkravitz: It has been our experience in the Chronic Illness Initiative that it is best to talk to your instructors at the beginning of the term. You don't have to tell them every detail about your illness because that overwhelms them. Jus to say I might need an accommodation at some point during the term. See what you can work out with your instructor if possibly you can get an Incomplete or an extension that lasts for 6-8 months.

Nora: How do you discover what your limits are/where denial starts?

lroyster: Another very difficult issue. I think that learning your limits is a lifelong process and it's particularly difficult when you have an illness. There are so many pressures telling you that you should be doing more. I find for most people the guilt that surrounds their not being able to do something inclines them more to pushing themselves.
There are some students who use illness as an excuse, of course, but they tend to be in the minority.

pkravitz: DePaul University has an online program. It is called Distance Education. You can go to snlonline.net and get more info. People who have taken online classes have really seemed to enjoy the experience. You can just stay home and work at your own pace and when you feel well enough to work

bleu: How to get support for these issued at other colleges?

lroyster: I'm not quite sure I understand this question. Did part of it get cut off?

Angie_: Maybe you could tell us what kind of accommodations universities/colleges can make when supporting a student with invisible illness.

lroyster: Well, we could write a book about this. First, it's important to look at the type of college. Does it have a flexible program? Is it student centered? Without this type of approach, it will be difficult for the administration to accommodate the unpredictable nature of the chronically ill students' needs.

If you have a reasonable environment, then some supports can include a person trained to understand chronic illness either in the disability office or in a separate program like ours who can help to advocate for the student. We also offer scholarships since financing an education is very difficult for people who cannot work. And, we offer various ways for our students to connect to one another since isolation is such a big problem.

Also, we pride ourselves on employing people who either have a chronic illness or who have someone in the family with an illness. Right now we have two students working with us and we plan to employ more. It's a great way to give them experience, get something on their resumes, and earn some money. It's good for us, too, because they really care about the program and bring us a lot of wonderful ideas.

pkravitz: The isolation issue is such a big one for all of our chronically ill students. You want to keep up with what your friends are doing and where they are going and you just can't. We had a Meet & Greet last night and one of the parents of a chronically ill daughter said, "I have never been in a place where there are so many people like me". She was relieved to be in a room full of parents with college age chronically ill students. I think the students felt the same way. I guess this suggests a support group to add balance to your life. You can spend some time with your peers and some time with people who are also struggling. I hope this helps.

standing: I am hopefully entering my last year at University, what advice would you give to ensure that I effectively manage my studies? My lecturers are aware of my condition and I receive support from the Uni. but I want to maximize my time thereby producing better results.

lroyster: I think having a good outside support system is important. If you have family members who can pick up the slack while you are finishing up, that's great. I would focus on prioritizing and goal setting. It's easy to get distracted, but if your goals are clear for each week and each day - and you have a Plan B for those times when you have setbacks - it's easier to stay on top of things. There's a lot more that could be said about this as well, but not knowing your specific circumstances, it's hard to say.

Lynnette: I was attending school online when I became ill this time. Since my illness is neurological and has cognitive effects, I took a leave of absence until after my brain surgery. I really want to go back after my surgery, but am very afraid of the cognitive effects returning (such as frequent inabilities to read and/or write, memory loss). Is there any way to work around issues such as these?

lroyster: This is something that your neurologist could probably answer better than I can. However, making your instructors aware of what the exact problems are and how you expect them to affect you would be important. Talking with your professor ahead of time and perhaps revising some projects or assignments might help. On line classes are good because you don't have to keep up at the same mental rate.

pkravitz: You raise a good point. In our program we try to suggest to students that it does not matter how long it takes you to complete your degree it is just a matter of as you said enriching yourself. We have so little control of our illnesses that any little accomplishment such as reading a part of a book, writing a short paper gives us some control and a sense of accomplishment.

heybeth: Could you speak more about how scholarships are awarded and how students can connect with one another in your program?

lroyster: We have a specially endowed CII scholarship for students in our program. We have a competition each August. It's difficult because we want to award one to every student! Re: connecting, we have Buddies, experienced CII students who help out new students, we just had a Fall Meet and Greet for students and their families so they could meet each other, and we are launching a peer discussion forum next week. We look for every opportunity we can find to reduce isolation.

patty123: How does one know if an on-line degree program is really as valid as one they would get had they attended a legitimate local/long distance campus?

lroyster: It depends on the school. In our program, the on line students get the same degree - a DePaul degree - as anyone on campus. Many of our students do a mix of on campus and on line courses. I teach in the on line program, and I find it's great. The fact that people aren't sitting next to each other makes them braver about speaking up and sharing their thoughts.

Maureen_Pratt: I'll start off with a question -- are there special issues associated with the older person who wants to go back to school and might have health issues, too? In other words, is advanced education the realm of the young only?

pkravitz: No definitely not. I think at any age you can learn and experience something new is a great accomplishment. Lynn teaches an online class which this quarter has 7 or 8 very young students in it and the rest are in their 40's or 50's. She has them working on a collaborative project online mixing the younger and older so the groups can have many useful perspectives. There is so much to learn from so many people when there are no boundaries related to age.

patty123: What are your thoughts of on-line courses for a master's degree (in psychology for example). Some courses have some on-line, but seems you still have to go to the college or "field" to learn. What is suggested for Master's online and in what programs? I have disabilities that make it very difficult to get to a college. Thanks

lroyster: Again, it depends on the program. Some of them are very good, others not so. Some require you to be there for certain parts of the program, some for very little of it. Our program is not yet completely on line although significant portions of it are. The Union Institute has a considerable on line component. Athabasca University in Canada does as well. I'm not all that well informed about other possibilities. If you can't find a program now, I would say, wait, there will be a lot soon.

cj_Encourage: I had to quit attending college; my daughter, who is also sick, would like to do distance learning.

pkravitz: We have our Distance Education Program which is at snlonline.net/. You can complete your entire college degree online. The courses can be done when you feel up to working and you don't need to leave the house.

Shep: I returned to school as an adult and spent nearly 20 years of plugging away at my degree. It was more a matter of wanting to 'enrich myself' than to get a degree. However, it felt good to continue in school and eventually get even a 'small' degree.

pkravitz: It does not really matter how long it takes to earn your degree. It is all about the sense of accomplishment.

Nora: Could you elaborate on the tactics for success?
lroyster: Another question about which we could write a book. Generally, however, our most successful students are those who are most willing to speak up and say what they need - in a clear way. I don't mean whining - we have students who do that, too! - but laying out exactly what would help them. Most professors want to help - and they're glad when the student tells them how they can do that. In the case where the professor is not helpful, being up front with Paula or me means that we can go to bat for the students. I guess I'm saying be clear about what you need and communicate that.

disabledanddone: Are you an online university?

pkravitz: We are actually both. DePaul is a university that has 9 colleges. One of the 9 is called the School for New Learning. That is the college we are connected to. That college has an online program as well as an on campus program. You can do both.

lroyster: DePaul is a very large university and very well known and respected - particularly in this area.

standing: I have gone back to school, it has been a challenge for the last few years, in particular the sense of isolation from my peers who simply don't understand and don't really want to understand.

pkravitz: I realized the question might not have appeared before the answer. This is my first time at this. It can be very challenging to want to be doing what your peers are doing and go where they are going to school etc. It is helpful to find some balance in your world. Some friends who you can socialize with that understand and are empathic to your illness, some friends who you enjoy being with and just don't discuss your illness with and possibly a support group where people really understand what you are struggling with.,

patty123: (Thanks for responding - but how does one really know if the on-line degree is as valid - by calling the university or what can you suggest)? Some on-lines don't seem to really give you the actual degree - it's hard to tell - or if they are scams etc)

lroyster: Well, you don't know unless you go to an independent source that rates colleges. I don't know of one offhand, but I'm sure you could find them. Newsweek magazine does an annual report. I don't know if they cover on line schools or not. If the school is purely on line, in most cases, it probably isn't as reputable as those where the school has added an on line component to an already well-accredited university.

agape: do your courses transfer into other colleges?

lroyster: Yes and no. The School for New Learning is a competence based program geared to adults, so our structure is a little different. Many of our courses do transfer, but some are kind of unique. If that is a concern, it would be good to talk to both the school you're thinking of transferring them into and the School for New Learning. If you want information about our program, you can go to www.snl.depaul.edu.
Lynnette: I agree that the connection factor is so very important, even if it is online. I can no longer drive, so isolation is a major issue for me. I think it is wonderful that you are so in-tune to that!

lroyster: Thanks, Lynette. Paula has done a terrific job of seeking out connection opportunities. She cares for each and every one of our students and does her best to help them.

Carol: My understanding is that secondary Universities do not have to be accredited by the state it is only optional?

lroyster: I don't know about that. I would think carefully about what you want the degree for. If you want to take courses for personal enrichment, it might not matter so much. However, if you want the degree for employment or as a prerequisite to grad school, you would probably need to go to an accredited institution.

agape: How do you know if a program you are getting is an accredited program or will be accepted in your profession?

lroyster: There are accrediting organizations for each area of the country that could tell you that. I don't know offhand how to find them, but you could probably look them up on line.

Bernwoodshanover: I'm here for a friend. She's a 45 yr old and she's doing an internship of some kind, but she worries about one particular professor who has already made her feel bad about being ill. Her support is in place and the school is aware of her condition. All she wanted to know is what could or SHOULD she say or do with this guy so she doesn't feel uncomfortable in his class (which she MUST take, unfortunately)?

pkravitz: Unfortunately there are always going to be those kind of instructors, doctors, nurses, in the world. When you are feeling bad already you don't need someone else's negative feelings about being ill to have to deal with also. It is good that your friend already has a support system in place that she can lean on. Most universities have Offices for Students with Disabilities. She could go to that office and discuss the situation with someone there. See if they can give her some insight or they can possibly tell him to take another look at how he is behaving. Every quarter we send a letter to all staff with suggestions as to how to work with chronically ill students. Your friend could ask the disabilities office to do something like that or possibly they need a disability awareness information session for all staff and faculty. I hope that helps.

patty123: For those who cannot drive does your university offer transportation for the disabled? If not, I suppose local state/town services could help people.

lroyster: No, but Chicago has a very good public transportation system and disabled people are entitled to discounts. In fact, driving in Chicago is not a great idea for anyone - parking is very expensive.
agape: is DePaul accrediated?

pkravitz: Yes DePaul is accredited.

craftingrama: I did go back to school a few years back and I found that the lack of financing for proper foods (in Canada) help to deteriorate my condition, I also found that the schools I went to did not have any counselors that helped me to learn coping skills. Is there a web site that addresses these issues to help those of us that want to go back to school?

lroyster: I don't think there is. There are very few schools that address chronic illness issues. In fact, we don't know of any programs like ours. Food issues and coping skills are something that are not usually provided by colleges - it would be way too expensive for them to manage. However, university counseling services can be helpful.

penny: Is DePaul regionally accredited? If so, by which angency?

pkravitz: I am certain DePaul is regionally accredited. To find out by which group you can call 312-362-5445.

Carol: How would the ones that are accredited by a good and ethically group just not State?

lroyster: I'm not sure I understand the question? The accrediting organizations are THE organizations that accredit all schools in the country. They are divided by region, but the clout is there regardless of where they are. States do not do the accrediting. I'm afraid I don't know any more about this issue.

penny: How did your program get started at DePaul? What type of response has it received?

lroyster: I started it a few years ago. My son has a chronic illness and I watched the problems he had trying to get an education. I was also teaching in the distance program and saw how, with some modifications, the School for New Learning program could work for people with chronic illness. I asked the Dean if I coudl try and she said ok. And now we have 200 students!

heybeth: do you accept credits from other colleges? If yes, are there any restrictions?

pkravitz: DePaul is a university that has 9 colleges. The college that our Chronic Illness Initiative is connected to is the School for New Learning. At SNL we do accept credits from other colleges. They have to be a Cor better. There is a list of preapproved courses on the website. That link is snl.depaul.edu. or call 312-362-5445. We take some writing classes but not all. It is best to check the website and or call.

Bernwoodshanover: You mentioned earlier about talking with your teachers....my friend has and THAT'S the problem. Although she hasn't needed extensions, etc., he made it quite clear that he hoped 'it wouldn't become a problem'. What should she do? You don't want to get the guy mad, I'm sure. Nothing like a lower grade to boost your confidence! It's sad really when she's trying so hard as an adult student with a chronic illness. Thank you.

pkravitz: It would be helpful if she went to her school's disability office. Typically they can handle things professionally.

Clarisse: Our hour is over; thank you so much Lynn and Paula for the very informative talk.

lroyster: Thanks, Clarisse! It's been great. So many good questions, so little time ....

Clarisse: Thank you all for coming. It was wonderful Lynn and Paula, so much to think about.

Mary_Shep: e program as many of us prior to chronic illness were over-achievers, go-