Transition to Adulthood with a Chronic Illness: College and Employment

If you have a chronic health condition, you have many things to consider when choosing a college. Your care teams can help. Here's some advice from young adults who had to make decisions about college, and from their pediatric care teams.


Transition to Adulthood with a Chronic Illness: College and Employment

Maggie Baldwin: I'm going to Salisbury University in Maryland. So, three hours away from home. I think moving to college is a big part of transitioning because I have to do everything on my own now.

Jeff Baldwin (Maggie’s dad): When we went down for preregistration, we decided we would spend the afternoon looking around and finding out about some of the medical facilities. We figured we might as well. We're down here anyway, we might as well look around. And so we went and talked to the appropriate people to find out about the pharmacy, about the local facilities.

Maggie Baldwin: They have a good medical center there, so I'd be taken care of if I ever got sick.

Jeff Baldwin (Maggie’s dad): We just wanted to be prepared so that — because we know she's going to have to take care of these things when she's down there.

Maggie Baldwin: I have to take care of my medicines and my ostomy and ordering everything.

Faheem Johnson: Yeah, we definitely had some contact with the school nurse, and I think we let her know, especially the first time I went to college, that I had Crohn's and I had to take my medicine.

Ritu Verma, MD: They need to get their records into the healthcare at the college itself, not necessarily a physician, but the health office that's there.

Faheem Johnson: If I had to be rushed into emergency and somebody knows that I have a file, the nurse has it, "This is what he has, this is how many meds he's taking, this is what — something might be wrong." So we did let them know.

Susan Peck, MSN, CRNP: You can be six hours by a plane away and still have good healthcare, so that — you should pick your college based on your areas of interest and what is the best fit for you.

Sarah Reilley: When I initially went to college, I had Sue Peck and Dr. Piccoli write up a letter, and they kind of said these are my needs, especially in the dorm situation.

David Piccoli, MD: And we work with the schools and with the families to do absolutely anything we can to get special accommodations and special understandings so that our patients who face a chronic illness can actually succeed in college and move forward successfully. That's really very important to us.

Keyshla Torres: From my first class, I asked Dr. Mamula for a letter saying about my condition.

Petar Mamula, MD: We provide letters both for their accommodations as well as for the teachers at school to understand that they may have symptoms, that they may miss classes, they may miss some schoolwork because of their condition, because of their disease.

Keyshla Torres: If I have to leave or if I have an emergency that has to do with my condition, that I have proof in the letter that there's a reason for me to be dismissed.

Sarah Reilley: I was pretty healthy going into college, but then my second year, when I started my sophomore year, the first semester I started getting pretty sick, and I actually had to take some time off.

Robert Reilley (Sarah’s dad): Kind of disappointing to both her and her parents, to say the least, and we had to work through that with the school.

Sarah Reilley: My college was wonderful with me and willing to work with me, because it was right before finals, and I didn't get to take finals because I was so sick. So they were willing to work with me in saying, "Whenever you feel better, after you have your surgery, we will give you your finals if you still want to take them, and we'll move on from there."

Robert Reilley (Sarah’s dad): They were quite accommodating in regards to crediting her for about 80 percent of her tuition.

Sarah Reilley: And they definitely worked with me and gave me what I needed and weren't discriminatory. They can't be with the 504s.

Ritu Verma, MD: So 504 plan, in my mind, from a school's standpoint, is extremely important because it allows the children to continue to go to school and continue to get the services that they should without the school saying, "Oh, well, the kid hasn't been to school for 10 days and, therefore, has to start all over again."

Maggie Baldwin: I used the 504 plan for high school, and it was really helpful, so I didn't actually know they had it for college, but I'm going to look into it now.

GI Patients Moving to Adult Healthcare: Employment With a Chronic Illness 

Charles Rawlings: When I graduated high school, I said to myself, "College is not for me. My next step, if it's not college, is working." I wanted to go out and get on my own and show my parents that I can do it without depending on them all the time. So that was my whole goal of getting a job. It fits me, it's me, you know? And I like it a whole lot. I look forward to coming to it every day and doing it with no complaints.

Petar Mamula, MD: At the age where most people need to transition to adult medicine is when they graduate from high school, and it depends on what they want to do. Some go on to get a job.

Mark Osterman, MD: The main thing that I work with and that we deal with with jobs is that sometimes our patients have to be absent. Sometimes they have to be absent frequently because they're sick.

Anne Grant, MSN, CRNP: It's important for you to discuss with your boss at some point that you may have a chronic illness. I don't think it's appropriate in the interview, I don't think it's appropriate on the first day of the job. I think you have to judge when it's appropriate.

Keyshla Torres: I felt safe because my employer was really open to me, and she kind of explained the career and the job path and all the conditions that we were going to be dealing with. And when she just opened up to me, I was like, "Well, this is going to be an opportunity for me. I might as well just open up to her and let her know about my condition."

Sarah Reilley: I don't go into a job letting them know I have Crohn's. I kind of do it only if it's a problem if I know I'm getting sick, or if I may suspect I might be out for a little bit, I'll definitely contact the people I need to contact. But it's a kind of need-to-know basis, but I am open about it if someone asks me.

Mark Osterman, MD: So we work with, up front, letting employers know that there are going to be times like this that are going to happen so that they're aware of what's going on. And then later, when these instances do occur, we let the employers know that they're absent because of medical reasons and that they won't be held against them for that.

Sarah Reilley: I think that me having a chronic illness and growing up with a chronic illness definitely helps me care for the kids that I care for. I'm actually a school nurse, and I'm a school nurse for a high school, so there's a lot of drama and things that go on with them. And for kids that I see that are very sick, I try to connect with them and relate to them and say, "You know, I have a chronic illness too, and we can work through it together, and this is what I did, or this may help you."

Anne Grant, MSN, CRNP: One of the best things about being involved with this age group is seeing them go from, sort of, young children without a lot of sense of direction sometimes to, over the matter of usually about 2, 3 years, becoming much more savvy at taking care of themselves, much more willing to take the responsibility.

Farzana Rashid, MD: They're trying to figure out who they are, who they want to be, where they want to go in life.

Anne Grant, MSN, CRNP: It's nice to see young people like Keyshla as well take that responsibility and enter the work world with, really, a sense of mission and purpose.

Farzana Rashid, MD: The goal for medical care is to provide the patient a good quality of life to be able to fulfill their maximum potential in their education, vocation and personal life.

Related Centers and Programs: Division of Gastroenterology, Hepatology and Nutrition