In the media there seems to be this totally romanticised view of illness – it brings people together, people are so brave and strong, it turns their lives around for the better… But what about those of us who aren’t like that? What about those of us who are brought to our knees by our own bodies (even if we are only temporarily beaten)? I may be alone here, but I guess this post is for those of us who are like that, and for those who have no idea what that feels like. (Excuse my patheticness. Excuse my weakness. And please don’t judge me because I’m sorry for this. But there’s a side to chronic illness that people don’t see. And although this entire blog seems to somehow or another expose that point of view, I kind of need to let it all out today. Because all I let out today were tears that caught me by surprise. And I don’t cry).
Nobody seems to appreciate the level of “too much” I am referring to when I say that everything is too much. I’ve sat all day listening to my friends melting down over university stresses. They talked about how they’d stayed up until the early hours of the morning crying for hours, how they’ve considered dropping out. But they’d carried on and somehow got through and dismissed my issues saying they’d been there too (or felt the same), as if it was nothing. They talked about us as if we were the same.
They are well enough to put hours and hours into their work, and they do. They spend hours in the library. They work and work to compensate for the irrational panic that they are miles behind. Like everyone else they are overwhelmed by the sudden increase in intensity and workload. They feel utterly stupid at times when they can’t do the coursework, but they figure it out somehow. But they are on a level pegging with everyone else. I feel inadequate and stupid and like a complete idiot in comparison to them, and they just keep telling me that I’m super smart. And although they are buckling under the pressure, they are in the same situation as everyone else. They have the time and the energy and the lack of brain fog required to study. They don’t have to juggle the stress of trying to keep themselves alive and constantly fighting a medical emergency and a level of health that should keep them in bed, with the stress of university and PTSD smashing through their mental state like a wrecking ball. The are healthy. I’m not. I can’t keep up with them. I wish they could see how lucky they are, but then again it’s all relative.
My brain has taken a long time to turn around and face its feelings towards my health issues. Denial reigns supreme inside my skull, but denial got exhausted lately and stepped back to let reality take the helm.
I am breaking in so many ways for so many reasons (most of which I haven’t mentioned even here). And I finally reached the moment where I couldn’t hold it together any more.
In the middle of a lab (where we were running a glucose oxidase assay to test for diabetes in a glucose tolerance test – I mention this because as a type one diabetic I am still stunned and kinda frustrated that even second year biomedical science students dismiss diabetes and don’t seem to be able to distinguish between the two types). I sat there feeling like a burden, wondering if they’d notice or care if I died and deciding that they all needed a break from my presence and it wasn’t fair of me to hang out with them, so I’d sit at the back in lectures alone.
“And what if this tear in my side
Just pours and pours and pours?
I wonder if they’d notice that I’m not around
The loss of a lonely man never makes much of a sound” – Frightened Rabbit, Yes I Would
More than that, they were buckling under just a fraction of what I was trying to deal with, and just because I wore a smile and hadn’t broken down on them like a few of them had with me, they thought I was ok. I felt invisible. I felt misunderstood, because nobody, nobody, seems to be able to grasp how serious my health hiccups are right now and how dangerous the situation is. They say I look well, but they’ve never seen me well. I am chronically in a state of mild acidosis here, and they’ve never seen me out of that. They’ve only ever seen me in a state that feels so awful that the first few times I was in it I actually went to hospital. In the middle of the lab session, my mind decided it’d had enough.
The dams of my eyelids were breached, and the tears came. Before the tears entered the world, I took off my gloves and my lab coat and excused myself from the room, dragging HK Uni Friend with me. WR Uni Friend (who I was working with) asked if I was alright. The answer, for once, was no. I left the room with HK Uni Friend. I stood by the lockers, pressed between their cool metal and the wooden fire door, and I just broke. I cried. And I don’t cry (there have been times when I’ve cried an irritating amount, but it takes a lot to make me cry). Hk Uni Friend knows the extent to which I refuse to cry, and so was extremely alarmed at the sight of my tears. She knew something bad was up, and I was embarrassed because it probably seemed disproportionately so. All I could say in answer to “what’s wrong” was everything. I don’t know… I can’t even… WHY AM I CRYING?!
I didn’t want to be crying. I was angry at myself for crying, yet each time I took a deep breath and tried to pull myself together, I’d think about one aspect that was proving too much and just cry again. I felt weak and pathetic and so, so stupid. And I just kept asking, why am I even crying? The response: “Because you haven’t for too long.”
I was sat in that lab with people who thought their worlds were ending when mine very nearly does on a regular basis. I was sat with people fortunate enough to have no idea what I was really going through, and who for that reason thought we were the same. One of our friends went to the emergency department of the hospital yesterday for a (admittedly very) sore throat. At the mention of the word chest pain the doctors completely overreacted and did very thorough testing to make sure the individual’s heart wasn’t about to explode or something. People made such a huge deal of it. The individual got outpourings of sympathy.
Maybe it’s because I have a different perspective. Maybe it’s because I don’t go to hospital unless I know I’m going to die within a few hours if I don’t (ok well that isn’t even the criteria any more because even that didn’t make me go last week). Maybe it’s because whenever I’ve been in hospital, I get forgotten, I stay alone, and I hate sympathy and cringe and squirm when it is directed at me… But I just suddenly felt a world apart from everyone in the room.
I carry on when others would buckle. I get out of bed when even I know I should stay in it. I push on through things I shouldn’t be able to get through without urgent medical care and I walk around feeling more unwell than a healthy person could ever comprehend (flu? I’d take flu any day of the week. Except my body would let it run riot and hospitalise me so maybe not… But to me a cold or whatever isn’t ill). I stood next to them all in a state I’m not sure they could manage, because I’m not sure how I manage it. I don’t make a huge deal of it. I play it down. I don’t over exaggerate and say I’m dying. I just carry on. Stubbornness is a weakness. Being too strong for too long is the biggest weakness of all. And reality found the fault-line in my denial at last.
I didn’t know how to face going back into a room full of people. Eventually we did (right after my headphones broke. Which made me all like asdfghjkl I can’t even what even seriously?!?! because music is my way of trying to cope a lot of the time). WR Uni Friend started saying she hadn’t meant to snap at me she was just concentrating. I think someone else asked if they’d done something wrong. When I assured them it was nothing to do with their actions, they dropped the subject. Uni Babe walked round and just hugged me. I instantly started crying again in a weird role reversal of our lecture the other week during which my shoulder was the one she was crying on. I apologised a lot as I cried. I said I didn’t know why I was crying. But she understands more than most and actually said it was quite justified. The others again started telling me that everyone was stressed over school and they’d all felt how I was feeling and I just said,
“You’ve felt half.” (Because they felt the uni side in isolation. I wanted them to appreciate that most of what seems to be freaking my mind out right now is actually my health too. Nearly dying terrified me this time, and with no denial to smother that feeling until it dies, I seem to just be losing it).
Someone got a bit moody and said that it was all relative to the worst thing you’ve ever experienced in your life so just because I’m dealing with way worse stuff doesn’t mean the reaction can’t be the same. I just looked at Uni Babe in a way that I hoped expressed the words these people do not understand. She gave me a look which said, I know pal. She just stood there with her arm around me continuing the rest of the experiment. And then one by one everyone was like
“Go and find [Uni Dad]”
But I can’t. I’m done talking to people because I’m done bothering them. I don’t feel like I can talk to anyone at the moment. Eventually I was dragged to find him, hoping and praying that he’d be elsewhere, and to my immense relief he was nowhere to be found. My personal tutor doesn’t like dealing with emotional stuff, so I didn’t bother going there. WR Uni Friend was with me and she said it was their job to “deal with this.” My heart sank again. This isn’t just uni stuff. This is uni stuff mixed with literal life and death, and the knowledge that I need to go to hospital but a crippling and illogical fear that is like a separate being that will not let me do what I need to do. It’s about living completely alone (which none of them do) and the loneliness. It’s about money worries and missing my dog and finding out yesterday that he’s developing cataracts and is too old to have his tumours operated on. It’s about being seriously and chronically unwell and just quietly carrying on, but wishing that someone understood how serious the situation currently is (and has been for a while). It’s about family stuff and feeling like I bother everyone. People are always amused that on group chats I apologise for messaging at the start of my contribution, and send messages apologising for burdening people and thanking them for putting up with me every time I hang out with someone. And then… After that pathetic lot… Then it’s the uni stress that gets me.
I’ve never let myself feel anything about my health hiccups before. I’ve never felt fear like this. I have an infection and I know what that means. I know that with my immune system and the diabetes that it will take hold and spread like a wildfire (despite the antibiotics I keep for this exact sort of situation, which I’ve started taking and are the right sort for this type of infection). I know it will put me in hospital, which means that it will almost kill me (because I don’t go to hospitals unless I’m dragged there unconscious or have at some point been in a heap on the floor). I know because I’ve been here before. This time it’s a soft tissue infection in my foot, so it hurts to walk and I can’t put my foot flat, which has messed up my ankle. My other foot is broken (healing, but still being walked on so…), which led to me tearing my achilles and calf a little when I tried running the other day, so I can’t walk properly on that leg either. Pain that I’m not used to experiencing makes me irritable. But, as pain is my body’s way of telling me no, it also makes every step an act of defiance, and that makes me feel strong, so I carry on through it all. It reminds me that I’m alive, and I hate the unpleasantness of it but sort of feel like I deserve to hurt and don’t want to waste anybody’s time with… Me.
I live wondering about when I will fall. It isn’t a case of if. I am in the early stages of something that has the power to very quickly take my life, and I stay here all the time. My body adapted to this normal, so the fact that I’ve been feeling unwell lately is not a good sign. I’m spending hours unconscious due to health hiccups that take it in turns to be the cause of my loss of consciousness. I’m fashioning rudimentary IVs and battling things I can’t hold off. I am fighting for my life. And every minute of every day, in the absence of my denial, I wonder how many more minutes I have before he comes for me again – the grim reaper, I mean. Every minute of every day, I’m scared.
After all this time. After so many brushes with death. I’m scared.
And it isn’t a phobia. A phobia is an irrational fear and this isn’t irrational. That’s the point. What makes it even more scary is that it’s justifiable. It’s a realistic, justifiable fear. I don’t know how to explain that to anyone without passing it on. I feel like nobody understands.
My friend (more like a wise old mentor) is a consultant, and for months he’s been saying that I’m carrying things that people twice my age haven’t ever had to think about and couldn’t cope with if they did, and that my mind is like a pressure cooker. He tried to get me to open up to him. He tried to get me to cry about it. He tried to break through my denial. But he isn’t a uni parent, so he doesn’t have the freakish power to make me do any of those things. I’m trapped inside my own mind and I hate it here. And nobody understands. I couldn’t face them. I didn’t even want to drink this time. I didn’t know what to do. I felt nothing. I thought forward and there was nothing. I tried to think of a solution and there was nothing. I was just numb. There was no desire to do anything, except the briefest imagination of me stepping out in front of a bus (but that was before I broke down). I just felt nothing.
So I’ve kind of withdrawn. I’ve gone back to my room (after a shopping trip yesterday I have Da Vinci’s notebook page on my wall – y’know, the anatomical drawing – and have significantly added to my funny/ inspirational postcard collection. I’m trying to make it a little bubble of science and inspiration and getting-it-togetherness). I bought a sketchbook yesterday. And I want to just draw.
I know this is pathetic, and you can judge me for it all you like. I don’t mean to sound ungrateful. I just honestly don’t know how to face the world right now. I don’t even know what to do. I’ve no idea who to turn to. I feel like I’m stranded on an island watching the entire world carry on yet so far from it all.
Thanks for reading this one. Really. My apologies.
Trying To Get A Life 