Thursday, September 19, 2013

Young People with ME/CFS - the Long Road to Independence

By the time most kids hit 18, they are more than ready to leave home and get out on their own. In many cases, they've been struggling to gain independence for years already, pushing their parents away, copping that infamous eye-rolling attitude, and itching to get away from the rules and structures of mom and dad's house. Even for those kids who can't wait to leave home, college can be a difficult adjustment - learning to take care of yourself, finding out what your limits are, and dealing with the stress of juggling multiple classes, tests, projects, etc.

Now imagine all of those adjustments and struggles while also managing a debilitating chronic illness (plus a few long-term tick-borne infections!). I know that many of you don't have to imagine it - you lived through it or are living through it now. I was perfectly healthy until I got ME/CFS at age 37, so it is hard for me to think of being that sick during my college years (I definitely burnt the candle at both ends!). My own 19-year old son is going through all of this now, and I had a rare chance this morning to cram a little bit of mothering, caring, and advice into our brief time together at a doctor's appointment.

Overall, he is doing quite well in college - beyond our wildest dreams a few years ago! He just started his sophomore (second) year, he lives on campus in a single dorm room, he takes 3 classes each semester, plus an extra one each during the brief winter and summer sessions, and has so far maintained a B average (he was a straight-A student for most of his earlier years, but again, just being there in college feels like a miracle to us).

I met him at a doctor's office this morning (he goes to a college nearby) for a follow-up appointment for an injury that happened a few weeks ago. I could tell the moment I walked in the door to the waiting room that he was not in good shape. He looked exhausted - beyond exhausted in that way that only someone with CFS can truly understand - and seriously brain-fogged (again, it takes a CFSer to recognize that vacant expression!).

He told me that he had pushed WAY beyond his limits yesterday and had an equally difficult day ahead of him today. He woke up at 8 am yesterday to fit in 2 hours of math homework before his first class, took a quiz, went to a second class, then had a 3-hour Chemistry lab! That meant that he and his friends couldn't get started on their group project until almost 9 pm at night. Until he went away to college last year, he rarely stayed up past 9 pm!! He worked on the project until 2 am - classic late-night studies for a normal college student but a superhuman feat of impossibility for a kid with ME/CFS, Lyme disease, plus 2 other tick infections. Today, he has two quizzes scheduled, plus a lot more homework. He was so wiped out that he woke up and came directly to the doctor's office, without having time for breakfast or morning medicines - a real no-no for him.

He sounded totally defeated and kept saying that he had no choice - he HAD to get all of this done. I only had a half hour with him, but I tried my hardest to be supportive and remind him that he does have options. I encouraged him to talk to at least one of his professors about postponing today's quiz. He has an accommodations plan with the college and already spoke to each of his professors about his illness at the start of the semester. It has been hard for him to learn how to speak up for himself and advocate for himself.

He said to me today, "But a college student is supposed to just get everything done and be independent. I don't want to ask for special treatment and have him think I'm not capable." I gently reminded him that he is dealing with several very serious, debilitating illnesses, that his professors won't understand how it all affects him if he doesn't explain, that his accommodations are not special treatment but just a way to try to level the playing field, and that the Disability office is behind him. I encouraged him to explain to his professors how a late night studying or too many quizzes in one day affect him, how his brain just gets overloaded and stops working. He finally agreed to talk to one of the professors today about possibly taking the quiz tomorrow, so he can rest first.

Then I had him follow me to a nearby coffee shop, where I bought him a blueberry scone (his favorite!) so he at least had something in his stomach for his first class. I think I convinced him to ease up on himself and open up more with his professors. I hope the rest of the day will be easier for him. I'm so glad I happened to be able to see him this morning, right when he needed some support, though I wish I could have done more. It was hard to say good-bye and drive away.

This period of growing up and becoming more independent isn't just difficult for him; it's tough for us as parents, too. Like all parents, we hate to see our child suffer and want to protect him and keep him safe. He is only 20 minutes away at college and comes home every Sunday so I can refill his 6 overloaded, always-changing medicine reminder boxes. In between those brief visits, we try very hard not to interfere and to let him live his own life. We want him to experience all that college has to offer, including that growth toward independence. But it's a hard balance to maintain when your child has been ill for so long, and you are used to doing so much for him.

Until about a year ago when he started college, he was severely incapacitated for much of his junior and senior years of high school, due to starting his treatments for Lyme and the other two tick infections. We had to do almost everything for him, not because we were overprotective parents but because he was literally incapable of getting up off the couch much of the time (see How My Son Went from Couchbound to College for more info). We acted as his advocates, with both medical personnel and school administrators and teachers, fighting for his rights and refusing to take no for an answer. He was so sick senior year that he barely managed to graduate on time (with the help of home tutoring, exemption from all 4th quarter work and from most final exams, and working through the summer), so he had no extra energy for college or scholarship applications. I did all of that for him, except the essays, because we had no other choice and he so badly wanted to start college on time. And somehow, he did!

It's a hard transition for us, to go from doing so much for him, taking care of him, and advocating for him, to suddenly not even knowing what is going on in his day-to-day life. We try let him do things for himself and don't text him unless we need something specifically. I think he is doing very well overall - he loves college, loves being on his own, loves all the time with his friends. On days like today, however, it is hard not to just bring him back home and take care of him until he feels better!

It is a long and bumpy road to independence for both him and us, but we are grateful that he is on that road at all. Intellectually, I know that he will get past this tough period this week and be fine, but emotionally, I want to wrap him in my arms and take care of him. Old habits are hard to break. I know that all parents go through this struggle to some extent, but it is just so much more complicated for parents of kids who are ill or have special needs.

I am sitting on my hands so I can't text him...


Sweetbriar Sisters said...

I was in the middle of college when I got sick with CFS. College is HARD when you're also constantly fighting your own body! Good for him for doing something so hard. I am always so impressed when I hear about chronically ill students.

Sally said...

I'm 21 and have been living with CFS for about 8 months now. It's so hard. People talk about their 20s being their best years, but so far I must say I'm not impressed! By and large and surrounded by supportive people but each day is still difficult.

Knowing that CFS could be part of my life and for a long time and limit my career options before I even get started is still hard for me to deal with. And don't even get me started on trying to socialise with or date other young people! Their parties *start* well after my bed-time!

Sue Jackson said...

I can't imagine getting sick in college - or so young for that matter.

Thanks for the support - hope you are doing somewhat better these days!


Sue Jackson said...

Sally, I feel for you - those first years are the toughest, with so much to adjust to...especially when you are so young!

Wonderful that you have supportive people in your life. Do you also have a supportive and knowledgable doctor?

The good news is that the best chance of recovery is in the first few years and even better if you got sick young. Don't give up hope! But it is important that you are under the care of a doctor who knows how to treat CFS - there are many treatments available to help you feel better and others that can even help you to recover, especially in these early years. Most important is to diagnose and treat underlying infections. If you know what your triggering infection was (mono, Lyme, etc.), even better!

Please ask me if you need more information -


Sally said...

Thanks, Sue! I have been seeing a really helpful and supportive doctor who diagnosed me early (just 4 months into the illness) and that has been a massive help. She has just gone off on maternity leave though (9 months over here), so I'm switching to a new practice that's nearer to my home. I've heard good things about this new practice though from other people with CFS.

About 2 months ago I went on beta-blockers to help treat my POTS (in no small part thanks to your wonderful writing about it on here) and it's been incredibly helpful. We've got a lot of symptom management medications and plans in place for specific symptoms (pain, headaches, nausea, etc) but haven't yet cracked the underlying viral trigger. We'll keep working at it though.

Sue Jackson said...

So glad to hear you have a supportive doctor!!! That makes all the difference.


Unknown said...

I remember my first exam I took after my seven year leave of absence. (I left school at the beginning of my senior year). I did poorly on the test. I talked to my professor about it, and he finally knew about my condition. I had to swallow my pride and use the "advantages" I had to postpone quizzes. But you're right, it was really just levelling the playing field.
BTW, I ended up graduating with honors!

Sue Jackson said...

Good for you, Beatrice, for graduating with honors even with such a devastating illness!