Chronically Ill in University: Crohn’s Disease Awareness

I’ve tried to write this post many times, but the words just don’t look right together. I’ve already missed crohn’s disease awereness day two years in a row, so that says something about my qualms about writing this. But I think I’ve figured out what I want to say, or at least some of it.

Right now, today, my disease should be under control. You can live a normal life with crohn’s disease, they say. I was relieved when I got the diagnosis, because it only put words to something my body had been going through for so many years, so much time spent searching. And yet now, today, I am about to fail two out of five exams this semester. I am in the likely best university in my country studying physics, in my first year. And since before corona started I have been so ill, in various shapes, but of course I couldn’t figure out what was going on because everything shut down because of corona. (I also wasn’t allowed to get an actual corona test.)

Yet, going through so many years with people telling me that my pain, my disease, wasn’t real – that’s what I fall back on. That’s what’s in my head, trying to shame me into pushing through even though I know that’s not true. I know that now, I knew that then. Yet crohn’s is an often invisible illness, I’ve often looked my “best” right before collapsing or having to be admitted to the hospital or spending months bedridden in pain. I was complimented on how I’d lost weight, even as it was harder and harder to keep up in taekwondo class because spinning made me feel like I would faint and as I laid down on my stomach on the floor after push-ups, huge symmetrical blue and purple bruises would blossom on my hips and I had no idea why. I’ve made so many coping tactics, some good, some maybe not so, but I hate it when people critic them as if they know where I’m coming from.

I’ve made so much progress. And it more often than not feels like I regress again, every time I get sick with something new, or my crohn’s gets worse, but that’s not the right words to use. I don’t regress, because I’m not in control of it. And yet, it’s me that have to pick myself up again every time I lose muscle, everytime I have spent a month nearly dying, everytime I watch my brother go through the same fucking illness as me. And up ’til this point, there’s been little help to get compared to the criticism I’ve had to fight through.

Maybe I didn’t manage to figure out what was wrong and fix it in time for these last two exams. I did manage to pull myself together and focus enough that I completed the first three. It’s been a hell of a couple months. The only reason I’m hurting about ‘failing’ right now is that I’ve been in more pain before and still pulled through, but I now realize that I shouldn’t have had to. And with that ounce of compassion for myself I’m going to let that shame go, and not see this as a sign that I will never be able to do this. I will pull myself up again alone, this time as well. Eventually.

Say fuck you to everyone who expects you to have a completely normal life with this disease. ‘You can live a normal life with crohn’s disease’ does not mean you have to live up to that, it’s to not exclude possibilities when you feel most hopeless. And I will fight in any way I can again anyone else feeling as hopeless as I’ve been made to feel about my chronic illnesses.

I made this embroidery staying up too many nights trying to keep sane before my painkillers set in and the stomach pain withdrew enough to let me sleep. Here’s to hoping for a better and more energic summer than spring.

Going to University with Chronical Illnesses | Planning #1

This is not a how-to post and I unfortunately don’t have much advice to give. I would actually love to hear some advice if you got it. But I still want to make a post during this start of university where I just discuss my worries surrounding starting this new, stressful-for-normal-people every day.

To say something about how I got here; I really fought for an education. I think a lot of people with chronic illnesses and other disabilities have to, to a degree, no matter where they come from. Even though I live in Norway with protected rights to education, there was so much working against me to get here. But that is its own story. The thing is; I got here. I’m surprised and relieved.

I love the people surrounding me and how smart they are. I love taking it all it and hanging out with people and barely grasping what is happening in math lectures. I’m on a roll, about to be caught up mostly in different aspects of my life. A balance is reachable! And then my body will shut down. It did this week, for multiple reasons. And while I’ve been able to take a break from thinking about illness until now, even though I’ve had a base-level of pain with me every day (some days worse than other), now I have to call doctors and switch one of the many medicines I’m on and keep this part of my life going with filling out forms and sending letters and … it’s a lot.

Some of my fellow physics students are the cliches of having their head so deep in a book that they forget about the world around them until someone brings them coffee/food/calls and asks them why the hell they’re not meeting them as planned. I can do that as well … for a couple hours. But if I was that person I would probably not survive long, or at minimum – in the short run – suffer greatly. I’m forced to have at least this part of my life, the medical, organized. And it’s something you never can plan for.

How to plan if you’re chronically ill:

  • Don’t. Or at least that’s what I’ve landed on after many years. I will have plans, and if other people are involved, sometimes you got to attach dates to those plans. But always have a way out, depending on how important that thing is for you. And for the less important things, keep the plan an idea as long as possible (this only works if you communicate well with those around you, and evaluate the possibilities of the individual situation). And depending on that week or day’s energy/pain level, set or change those plans. To sum up; no plans are set in stone.
  • Know that there will be x amount of days/weeks of school work lost due to illness, try not to be angry or stressed out at yourself when it happens, roll with the punches. It’s so difficult. I’m not doing great at it right now. You’re at least learning efficiency when you get back.
  • Try to get as much help as possible. To learn things, to get notes. From anyone. Like be honest and reach out and know that you have a good reason. Try to be that person to others when you have better periods and they got issues, if possible.
  • Always book those hospital/doctor appointments as soon as possible. It’s easier now that I’ve actually got free time sometime during the day, mostly, instead of in high school sneaking out of class and sitting on the bathroom floor of the handicap stall (one of many, I wasn’t in anyone’s way) for twenty minutes while waiting to get through on the phone. It’s still easy to avoid. But it doesn’t get better.

First weeks at university | Bi-Weekly Update

So I made a tiny update half a month ago, and then disappeared again. Well, it’s probably going to happen more this coming weeks. It’s currently 2 am, because that’s when I have actual time to myself anymore. Let start with some book things –

I’ve posted two scheduled posts, not even worth mentioning. What is more interesting is how I found “On Dublin Street” by Samantha Young from a twitter aesthetic photo, and started reading it immediately. It’s a not-at-all-well-written smut, but it was something to get me starting reading again between huge textbooks. In the beginning of August I also read and really liked the heavier and much more thought-provoking pieces of work that is Karamo’s memoir and Girls of Paper and Fire by Natasha Ngan.

I’ve joined a book club on campus!

Or I’m going to, next week. I’m so excited about how cozy it’s going to be, and I’m definitely bringing blankets, sitting there sipping tea discussing books in real life for the first time in forever.

I’ve started university, first year bachelor in physics

My main worry was going into university with heavy courseload right off the bat, without time to get to know people. Well – yes and no? The first week was without many lectures or school, just a lot of info, but a completely full social program, meaning I was barely home from 8 am to like 2 am the next day. And then came a week with both MORE lectures than usual AND social happenings all the time (but luckily less partying, or at least I toned it down a lot). I’ve gotten to know the smartest, most inclusive, most nerdy (I really love how nerdy we all are) people. I really missed from high school the fact that, while I did have friends that cared about their subjects, I wanted someone to discuss things with that were genuinely interested in how and why behind science and not just focused on doing well to get into med-school or memorizing things.

I also live in a huge building with my own bathroom, but sharing kitchen with 14 other people. And while it does sound terrifying, it has gone okay (it’s still too dirty, we’re working on it), and it’s lovely to come home to people when you’re so far away from family. We have one international student among us, a master student from India, and he talked about how he hoped we would become a big family-like group. And I really hope so. I really connected with one girl and her friend the first day here, and she noted all of us living here were acting like “very introverted siblings who have care and warmth for each other when we meet in the kitchen, but all scatter to their own rooms straight afterwards to do their own things”.

I’m sorry to say I have had no time to catch up on people’s blogs! I miss writing reviews the most personally, and really hope things will calm down a bit sooner rather than later. It’s such a weird feeling being in this situation because every routine in my life has to be made from scratch, and until now I’ve had no regular schedule to work with. And also my room has been a mess of trying to find things packed in boxes. And I’ve been up to 2 am too often, and actually twice until 7 am, discussing books and the most nerdy shit at parties. While I’m not quite similiar to all the people I study with, I really find myself at ease among them.

Also, believe it or not (my parents surely don’t), I’ve already spent a lot of hours with my head in textbooks and chewing on pens trying to solve the same math problems for the past hour and getting ten different answers that all aren’t quite correct. (Fuck you, matrices). While I’m a physics undergraduate, I’ve got two math, one physics and one IT subject this year. It’s already been joked about how I, still using my fingers to count most of the time, managed to get into uni. Oh, how I wish I could calculate large numbers immediately as some I’ve met here. I’ve been warned by master students that this one physics course is THE TOUGHEST course they’ve taken (considering the level of knowledge they had at the time) and that the only good advice they can give is to just stick with it and never give up. So I’m planning on taking it one step at a time, trying to get to that finish line of first exams in December in one piece. But also, besides the book club, the math/physics students also have a lot of other things going on, of which I’m definitely joining producing 400 L of what’s called “wine” (with the quotes, yes I’m suspicious as well, something about making it from a concentrate).

In general, I’m so up in the skies, and so damn tired, that I really don’t know what to expect going forward. It’s been a lot this past month and while I’ve adapted to situations out of need this quickly before, I’ve voluntarily put myself out there and never before grown as much as a person as a result. Who knows, might be temporary.

Back to the books!

Added to my TBR recently:

  • The Incendiaries by R. O. Kwon (contemporary fiction. I saw something by the author on twitter – can’t remember what – that made me very interested in this book)
  • Wild by Cheryl Strayed (nonfic memoir)
  • Ninefox Gambit by Yoon Ha Lee (sci-fi, space opera)
  • Conservation of Shadows by Yoon Ha Lee (short sci-fi/fantasy stories)
  • Bloom by Kevin Panetta & Savanna Ganucheau (lgbt YA graphic novels)
  • Sea Witch by Sarah Henning (YA fantasy, mermaids)
  • Why I’m No Longer Talking to White People About Race by Reni Eddo-Lodge (nonfic, feminism, race, politics)
  • Educated by Tara Westover (memoir)
  • Both these books were brought up and recommended by someone I got to know, so even if they’re quite out of what I would normally read, I’m hoping to pick them up and hopefully find some really interesting points in them