Writing project & having an autoimmune disease

This is terrifying to admit, but I nearly have a first draft of a novel. It’s not that uncommon for readers to figure out they want to produce something themselves, but it’s still a new thing to me. What makes it even more terrifying is that the beginning, a lot of middle parts and the ending is written, there’s just scenes in between not written out. Mostly because I very much discover the story as I write, and some parts which seemed too “obvious” to me in how the plot would flow wasn’t prioritized. And so I skipped writing them, for the sake of keeping my brain on what it considered the storyline. And hopefully this year I’ll write them out and stitch this patchwork into a real quilt of a first draft.

It’s not that I have to get it done this year, but it would be a good way to bring it to a temporary close and move on to smaller writing projects. I started writing it as a coping mechanism when I got worse from (and was diagnosed with) my chronic autoimmune illness (Crohn’s disease) and I very much knew that at the time. But it was a pretty good one. I had a lot of very vivid dreams because of the pain I was in, but the imagining of stories kind of turned what would’ve been nightmares into action-scenarios. Some nights I wasn’t quite in control or lucid while dreaming, but it was like I was the narrator figuring out if something would work logically in the storyline and even stopping attacks on me and my group if they didn’t make sense for the plot. Of course, the dreams and the story I wrote was separate things, I didn’t have that much control as to place myself within them. But it definitely helped me get some peace with my situation.

I won’t do anything with this first draft when it’s done, except rework it a bit. It’s been a process, the project has grown with me as a hobby. As I went back to it over the years, my writing had gotten so much better and so I never got to finish it because I was simply gritting my teeth at what was on the page and rewriting. But it makes sense to me that I didn’t write the end before recently because I very much started it before I was an adult living on my own, then grew into that. I had written major conflicts into the book, both on a personal level and on a city-wide level, and hadn’t had enough experiences to solve them. And then I realized you can solve the smaller problems or the bigger ones, but rarely are both solved all at once. And that’s how you get characters who both win and lose, and thus an ending to a story.

I’m really ill again. Which is why I’m writing this or thinking of the story. I’m currently in my 4th year of studying physics, a bit behind already because of illness. But most of the people I study with took an extra year, because it’s a challenging study programme. I have to make the choice soon of whether I want to apply for a masters degree in physics, as well as in what field. It’s difficult feeling confident in your abilities and discussing them with a potential supervisor when you are not able to study as you used to, even if you know it’s temporary. Because in the middle of it all, my chronic illness worsened and I can do nothing but wait for my appointments.

I hate the waiting. I hate hyperventilating outside of a doctor’s office because they haven’t read my case and make wrong conclusions they won’t be talked out of. But these worse periods are never that dire. Even when the world felt like it had come apart from my pain, I still bounced back. I might not remember the Brandon Sanderson book I read that summer, but it encouraged me to wean off heavy painkillers early. Even when my pancreas got inflammed, which was a known risk post-surgery. It’s simply amazing how fast a human body can go from not being able to walk a hallway to running up hills. And how long the after-effects can stay in your body, making you never certain if the running will be effortless or if you will suddenly pass out at the top.

I have on average gotten worse from my disease every two years or so, in a kind of atypical pattern as my body just gets allergic to the medication I take and I have to start a new one. This time it just seemed to stop working by itself. It’s a many-month process each time I get worse because the new medications takes time to start working. On the other hand, the medication I’m on right now was approved for use less than a year before I started taking it, so I’m constantly buying myself time and blessed that medical science continues moving forward. So this spring I’m taking it slow, not expecting much of myself or my body, especially not my brain. Which coincidentally signed up to get an adhd evaluation before all this went downhill, as I looked back at my life and came to realize some patterns.

Still, I’m happy, in all other aspects of life. Which is a wonderful feeling. To be in crisis, but to still not be in crisis. I know I am a disabled student all the time. But I’m allowing myself the space to delve into what that means when I am worse like now, and to forget what that means when I’m better.

being sick, friendship & empathy | existential thoughts

What truly is burning a hole in my soul right now is that, as students, people were so shocked and heartwarming about me having been admitted to the hospital. But in real life I’m so much expected to take care of myself without help, especially as everyone is busier with exam season close by, and it’s truly hard to keep up this semester with making food for myself, let alone study enough.

It’s not my fellow students’ fault – chronic illness is something truly difficult to understand how affects a person (and how much it varies) unless you’ve seen it up close, but I’ve found the STEM (mainly physics) crowd I spend most time with have few people that truly understand. I’m used to that, but it also tears at me, because I have to stop mirroring the people I’m surrounded with and realize I’m at a disadvantage. It does not mean I can never aspire to my ambitions, I do study physics for fuck’s sake, but that certain things will be different; more difficult for the most part.

Disabled is a term it took me a long time to be comfortable with using about myself for various reasons. Now I have to make the people around me comfortable with it as well, because even the ones who mean well have not yet faced the fact that I won’t become – and then stay (which is the most difficult part) – not sick. How energetic I am will constantly change, how much I can participate in parties or movie nights, or anything in between, will change. I can work on not instantly becoming social anxious when I’m more ill, because suddenly I can’t read the whole room like I usually can and I know I miss more social cues – these are examples of things I’ve realized overwhelmes me only recently.

The hardest parts of being chronically ill for me hasn’t been the pain, although that is a major problem when it truly gets bad; it has been to get people – doctors, friends, former friends, family, teachers, school administrators – to understand. Although I’ve lost a lot being chronically ill since I was a child, I’ve also gained qualities, among them a high level of empathy. It makes sense; it has been cruicial to my survival in a particular way, as well as something I’ve been raised to be very aware of. But I think going forward I’m going to have to mold what empathy means to me and kind of extract the parts of it that hinders me from asking people for something if I think they’re going to reject me. At this point I would rather go through that painful process and hopefully end up with a core group I know that care, even if I’m not in shape to go to a certain party with them. Or worse – somehow see me studying less or being awake at strange times, and directly connects it to laziness and me not being up for this. Whatever this is.

I’ve seen the signs of that happening recently with a truly close friend – I’ve gone through that type of friend-breakup before after all – along with some comments I’ve been getting from them. And I got so frustrated until I realized more than anything we’re in an university enviroment where you’re constantly afraid people will suddenly just leave. We as a student body are dependent for each other for more than we realize in our daily life, especially during covid-times, where we have nowhere else to turn to to fill our days (hopefully with some work), get us out of bed on a schedule or cheer us up.

Or discuss big philosophical ideas with, while hating on the one obligatory philosophy course we have, of course. In the end, my core friendgroup is weird, not in the way of ~we’re so quirky~, but in the way of “we’re STEM students all with different degrees of lack of social abilities, we joke about that constantly, but it’s true and sometimes the areas we lack makes people more hurt than intended in certain situations”. Sometimes it makes it impossible to see that you’ve hurt someone, or is making it more difficult for them. I think another change I will have to do is be conscious of telling them when it happens, softly of course*. Because I do believe they don’t dislike me as a person, even if I’ve gotten the reputation of being a bit chaotic and not as smart recently. And for the last one, at least, I know I can prove them wrong, if only my health would pick up the pace getting better.

I’ll continue looking elsewhere for support when it comes to my chronic illness. I think the temporary conclusion I’ve come to is that I’ve always found myself having friends for different purposes; I do different things with them and have a different level of openness/vulnerability. And that a person doesn’t have to understand what I’m going through as long as they show that they do care, even in their mistakes. It’s a strange space to be in right now; I both do not have the energy to deal with it, and it has risen as a bigger issue because of that.

The next day

I’m wary about sharing anything too personal on the internet, so I’m nervous about this one. But I want to add that I went from writing this post as a very much uninterrupted stream of consciousness to walking out into my living room and seeing the people I live with and three additional friends, who’d just gotten here from a chill night drinking someplace else. And they cheered for me being “alive!” and home. And then threw a whole lot of questions at me, which included how I’d forgotten to tell one of the people I live with & talk to mostly every day about being in the hospital at all, which I mentioned in this bi-weekly update (my excuse is that I was truly drugged on painkillers).

After some hopefully-faux hurt souls, we were back to a strange place, but a more comfortable one than we had been for a long while. I didn’t feel like such an outsider, they could at least recognize something big had happened and that I was not that okay. That it wasn’t me that had voluntarily distanced myself from them, but shit had hit the fan health-wise and led to this.

And then as the evening progressed and we watched a movie, these obviously drunk people of mine continued to make fun of each other, and me, with some very poignant hospital/health jokes, which I laughed at genuinely because they were clever ones. But they did always add a concerned look, a comment that they were glad I was there and rounding the night of with a genuine discussion of “how bad/okay are you right now?” If anything it only reinforced the existing ideas I had about this whole situation the last months; they mean well, but sometime lack the ability to communicate it or are too hung up in their own things/views. But they also have generated this environment which has truly become home for me and for that I will work with all of it. ❤


* Or maybe not so softly. I might’ve already started this new strategy of mine off; it was the second time the same person commented on how I shouldn’t have kids because of my chronic illnesses and my reply might’ve been a longer version of “I understand what you mean because I know you, and you know I don’t currently want kids, but what you’re arguing for is pure eugenics.” They took it well, I will give them that.

For those wondering my diagnoses (so far) is the autoimmune illness Crohn’s disease, the gallbladder disorder Sphincter of Oddi dysfunction and a lung condition.