I am not ashamed of my illness

I usually have an uneasy feeling in the pit of my stomach, and a hesitant thought in the back of my mind when I'm meeting someone new. "Maybe I shouldn't tell them that I'm sick."

Now anyone who knows me, or reads this blog, knows that I am chronically ill with an autoimmune illness called Lupus. I've only got properly diagnosed a year and a half ago, after suffering from several symptoms for two months. (This however is still considered a quick diagnosis.)

I've come to realise that telling people that I'm sick makes them very uncomfortable, they either don't like the fact that they don't know anything about it, the fact that I don't look sick according to their standards, or they just simple don't know what to do with me after the fact. I understand their point of view, first of I was very uneducated in the topic of chronic illnesses before I became sick - because why should I know? I had been completely healthy my entire life and didn't see that changing at any point. But it did, I will never be 100% healthy again. (That statement apparently makes everyone but me uncomfortable..) I have come to accept this, and I am not ashamed of this fact, I just have to learn to live with it. 

It's an ongoing process, I have yet to actually 100% come to terms with this fact. I still fight a battle every day about what I can and can't do with my body. I have learned to listen to it better, but I'm a very stubborn person. I don't like to give up. A perfect example of this was a moment during my three weeks in hospital the summer of 2015. I had just gotten accepted to the photography school I am currently attending, I had fixed everything with accommodation and student finances before I got admitted to the hospital. Two weeks or so in to my stay and my father suggests we put off school for a year, as I would need time to heal and process the whole "sick for life" thing. I told him in no uncertain terms that if we did that then I would most certainly die in that hospital bed, for I would have nothing to look forward to and fight for. So, we didn't. I went to school just a month after my release and finished my chemo while starting my studies. It was the best decision I ever made.

But since i got out of hospital I've obviously have had to tell a lot of people that I'm sick. The school, my peers, when I applied for internships etc. It's a hard thing to do, because this is where that uneasy feeling and hesitant thought come in to play, what if they don't accept me based solely on the fact that I'm sick? I've found that it's quite a hard subject to broach because nobody ever asks you if you're sick, because most people don't realise you could be. My mother had to make the call to my school as I was too uneasy about it since it was so new, I then got telling my classmates about it out of the way when we had to present a self portrait on the first day of school and tell the class something about yourself.

Then came the internship interviews, and man was that hard. Because I am obviously weaker than my classmates, as my body continuously works against me every second of the day, and as a photography intern you have to do a lot of carrying. I feel very nervous every single time I tell someone about this, especially if something big is at stake. Say, an internship, a job or a relationship. I have yet to actually get so close to somebody to want to tell them about my illness but I would imagine that it will be hard as well.

Currently the time has come to start applying for assistant jobs and I'm not quite sure how to tell people about this, yet again. But I've decided that I am not going to be made into feeling ashamed or less for being ill. I am exactly as capable as anyone else to pursue this dream of mine, illness or not. I might have to fight harder, but just as capable nonetheless. I am tired of feeling like I can't talk about this, to people or on here - because people might view you as less. Well I am not, if anything I am more. I have had to fight my ass off to even be able to live, let alone pursue my biggest dream.

I don't want to have to hide such a big part of me just to be accepted, so I won't. From this day on I will be completely honest about that part of my life, because it affects every aspect of it. If you want me, want all of me. I will not be hiding my illness from anybody, and if you have a problem with that then well, fuck off.

Not taking anyone's shit, or giving a fuck, in hospital featuring my most flattering angles.
Photo 1, 2, 6, 8 & 9 courtesy of my mother.

How many spoons do you have today?

I've mentioned the fact that I have Lupus a couple of times but never actually gotten into it.

There's a bunch of actual medical facts on the internet but I thought I'd share my symptoms (and some general ones) and also my time from the hospital this summer.

As most of my close ones know I got very sick at the start of the summer, I almost fainted on the tube while being in London. I was sick for a bit over a month with symptoms including: fever (but only at night), fatigue - I couldn't walk more than 5 meters without everything in my eyesight becoming white and I had to sit down, I was freezing cold all the time, so much so that I wore at least two pairs of leggings in June, loss of appetite, I lost 10kg in about a month, I was red over my cheeks and nose, migraines and my entire body hurt.

I went to the local health center twice in two weeks to find out what was wrong with me, they found nothing and thought I'd caught a virus - they told me to go home and sleep it off. After two weeks of being away from work (+ two weeks prior to that I was on holiday) I decided to go back and work. I made it one week and two days until my boss said I needed to go home and get better - I was working with a fever. So I went back to the health center again and they now checked my blood count as they too thought it was odd that I wasn't any better. For a young woman built as me and with my age the blood count should be around 120 - 130, mine was 66, they now asked me how I could even stand. Off to the emergency room I went.

I got admitted immediately and the nurses started poking me with needles at once, although it was pretty hard to get blood but boy did they try. The next week that followed involved so much more poking with needles that I have lost count, but the first thing they did was put a ECG on me - just so they would know if I had a myocardial infarction which is always fun to know when you've just turned 21.

Left: When I was admitted to the hospital, they had to take lots of blood tests. Right: They had to keep moving it so it wouldn't get infected, it did once - now I have a round scar on my arm.

At the first hospital they x-rayed my lungs, did a ultrasound on my heart, gastroscopy (where they found a 6 month oldisch stomach ulcer), and a CT. When the results of the CT came back they saw that my kidney were the ones causing all the trouble (which the CT only made worse btw), so off to Malmö and the next hospital!

I stayed at the hospital in Malmö for two weeks, I got a specialist doctor and she informed me after a few days that they suspected lupus - which to know that you have a chronic illness at 21 is also not fun at all. I had all bunch of doctors look at me, I had neurologists there twice, I went to see a ophthalmologist (and boy was he a douchebag), had to go to Lund to see another specialist on my illness, and so on. Everything was so overwhelming and I didn't take the information in - why me? Why would I get sick? Why now? I didn't think it was fair, I still don't. But life isn't fair so.

After having been poked with needles numerous times I looked like a junkie..

While I was at the hospital in Malmö they did another ultrasound on my heart, and a ultrasound of the vessels in my throat (to make sure my brain got oxygen enough), a gland biopsy, I had two MRI's, a kidney biopsy and a lumbar puncture (to make sure I didn't have an inflammation in my brain as they found three dots on a vessel there) . This was also where I got really, really bad.

At the first hospital my heart started beating super fast every time I was up walking, I started shaking so badly that I had to be fed, and that was the first time I couldn't shower by myself. In Malmö my feet swelled up and started hurting so bad I couldn't walk, my father had to help me go to the bathroom and one time we had to stop in the middle of the room because my feet hurt so much I started crying. Before I was on my feet though I had to be rolled around everywhere in a chair, even to the bathroom. My fingers, and my left arm swelled up too, if I wanted/needed to go anywhere I needed to be taken there by someone else - in a wheelchair. I also showered twice, or well someone else showered me.

Left: Had to have my feet slightly off the bed as they had started swelling and hurting like a motherfucker.
Right: Having to walk around with an IV and a ECG at the first hospital.
Left: Hospital medicine.
Right: First time outside in three weeks, mum took me for icecream in a wheelchair.

Malmö was also the place where I got my first dose of chemotherapy. Yes, I got chemo - six doses of it. It's very common to treat Lupus with chemo, and no it's not "cancer-chemo" it's a much milder dose and I did not feel sick afterwards - neither of the six times. I am losing my hair though, which also sucks when you're 21 - but I'm betting that sucks no matter what age you are.

Sidenote: When I was out of the hospital and my immune system was down (right after I got a dose of chemo) I got the shingles. Just my fucking luck.

Left: Chemo is great fun.
Right: Got the shingles because said Chemo fucked my immune system even more.

The most common signs of lupus are: extreme fatigue, fever, headaches, hair loss, butterfly shaped rash across cheeks and nose, mouth or nose ulcers, painful or swollen joints, abnormal blood clotting, anemia, pain in chest or deep breathing, fingers turning white or blue when cold, sun or light sensitivity, and swelling in legs, feet, hands and around eyes. I had 10 out of the 13.

Cortisone is a medicine that helps with inflammation, it is also liquid binding. So I looked like a chipmunk in the mornings and I had almost 10kg's worth of water in my legs.

Currently I am done with chemo, and I am taking 8 tablettes/day. My blood count is up over 126, and my kidneys are back to normal. Some days are harder than others - today for example was worse than it has been in a while. I had pains all over my body, I had a hard time breathing, severe headache, fatigue and lots of shaking. But one gets used to it, even though that sounds very sad - it's true. I will be living with this illness for the rest of my life, technically I will never not be sick again. But it's not that bad, I can live life pretty normally anyway - it's just I have to be regularly tested and pay visits to my doctor, and cut certain things out of my life. But I'm happy anyway, mostly.

If you want to know more about what I actually experience, and to fully understand how my life is now, I highly recommend you reading The Spoon Theory, actually I think you should read it anyway - it's very informative.

Any questions at all, feel free to write to me, otherwise I'll see you next time! :)