Disclosure

Something that can be incredibly difficult when you have a chronic illness is disclosure. Its difficult to know when to tell someone about your arthritis, who to tell, and how much. For me I’ve always taken a very open approach to telling those around me about my juvenile arthritis. It’s no secret to those who know me, because I’ve never really seen why it should be. Arthritis is just one part of who I am, it’s not what I am, and as such I have always talked about it to anyone who has wanted to know. However, while I say that I’m very open about it it’s not something that I chose to spread around, or which I necessarily talk about without prompting. This is in part because I don’t want to be that girl, the one whose always complaining about her joints, her pain, her problems. I worry if I talk about it too much people may like me less, but I also don’t want to impose my problems onto others. In a way I want to shield them from all the pain, worry, and uncertainty that comes with having a chronic illness. I’m happy for people to know, but sometimes I worry if they know too much or I talk about it too much they will stop seeing me as just me, but instead see me as their friend with arthritis.

Recently I applied to medical schools and made the hard decision to disclose my juvenile arthritis in my personal statement. I decided to talk about it, because having juvenile arthritis is one of the driving forces behind my decision to go into medicine, and the initial instigator of my interest in medicine as a career. Since my diagnosis my love for medicine has grown and surpassed simply a desire to go into this field because of my own personal experiences, and yet my understanding of who I am and what I want to do would not be the same without the medical experiences that I have had due to my chronic illness. Given this, it seemed impossible to omit this crucial part of myself, and so I disclosed my diagnosis and focused on the ways it has enabled me to grow as a person and prepare myself for a career in medicine. While I do not regret my choice to disclose to medical schools that I have been diagnosed with juvenile arthritis, there is still a little voice in my head that has doubts about it every time I get a rejection letter. I know that these can happen for a number of reasons, not least because the application process is so competitive. But I still can’t help but wonder if disclosing my illness hurt my chances, if it allowed people to wonder about my capability both now and in the future. If instead of showing how much I’ve grown and how far I’ve come due to my chronic illness experiences, it instead showed my weaknesses and devalued my worth. The thing is even if none of this is happening, it highlights the true emotional struggle that comes with disclosure of a chronic illness, because while my fear about the medical school process is not founded in anything in particular, my distrust of how others will interpret my illness experience and see me as a person with a chronic illness is founded on experience. While most everyone I’ve told about my illness has been great, there have been those who have doubted my capability, who have seen me as less than because of my illness. Sometimes I have even had my own self doubts about my worth. So as I move forward I am trying to re-evaluate how much I want to disclose to people, who I want to disclose things to, and when. And it is a very hard thing to do, because while I am not arthritis, arthritis is a part of who I am. It has shaped me, allowed me to grow and mature as a person, and I while I currently have doubts about whether I feel comfortable being as open as I have been, I also feel like hiding this side of me would be a loss, to both myself and others.

Wisdom Teeth surgery

So yesterday I had all for of my Wisdom teeth removed, something that I admittedly was a bit anxious for. We got to the hospital early, got checked in and sent up to the day ward, where a nurse came and asked me all of the pre-op questions. You know the ones: name, any allergies, any illnesses, medications. She then came back with three hospital tags. One with my name on and hospital ID, one with the procedure I was having on it, and the third had my relevant medical information. When I looked at the third I had to stop myself from bursting into laughter, because of the spelling and interpretation of my answers. Some of it was fine, but then I get to my apparent irratatabile bowel syndrome and even better I had been given a new diagnosis, I’m sure the first of its kind, instead of stating that I had juvenile arthritis, the tag said jonovial arthritis. So my mum and I had a good laugh about this, and it eased the anxiety a bit, which is always a good thing.

Quite a while later I was taken up to surgery, where my anaesthetist poked around an IV for a while, but eventually gave up on the third one after what seemed like ages, but managed to get the second try in without too much trouble, although still quite a lot of jiggling to get it in place. Apparently I have very hard veins, which I haven’t heard before, and which worries me a bit, as I have heard it can happened. I also have tiny veins, which I know, but that seems to be getting a bit worse too. Hopefully it doesn’t get any worse. I have heard of so many people who have had to get ports put in because of similar things, and I never want to get to that stage.

Anyway I woke up from surgery, which the doctor told my mum went well. Only one problem, the tube that they had put up my nose and down my throat had irritated my throat muscles, causing them to feel very weak and like they were continuously closing off. I have had trouble with muscle weakness and swallowing before, and this felt similar, so we think the tube caused this to flare up a bit. So I had quite a long period of time where I was really unable to swallow much, not even my own saliva. This was a horrible experience, and a feeling that I would be happy never to experience again. Having to constantly clear your throat, spitting out blood and saliva because I couldn’t swallow it was, no fun, and not what I expected at all. So recovery took a while, about 1 1/2 hours to 2 hours, as we had to wait for my muscles to start to settle down, which they have mostly, but not completely yet. finally with some juice and ice-cream in me I could go home.

I had some trouble with stitches loosening that evening causing quite a lot of bleeding and the continued muscle weakness. thank goodness I have my mum, whose a doctor, and able to assess me when things go wrong, so I know if it’s really a problem or something that will pass.

Today I have had two nose bleeds, which I was told could happen from the tube, and some trouble with my jaw, which seems to have locked up a bit. It doesn’t want to open much more than a ringer wide (the amount of fingers you can insert into your mouth), which makes eating quite hard, but I’m hoping it’s just irritation and will pass soon. Besides that it seems to be healing fine, no infections (I had IV antibiotics yesterday and will be on oral antibiotics for ten days to try to prevent any chance of infection, especially as I have a compromised immune system), not too much tenderness, or swelling. I no longer look like a squirrel that has been trying to store enough nuts for winter in its cheeks, just some slight swelling left.

so I see my doc in a week, to see how it’s getting on. So I will update then. Tomorrow I will head off to the endocrinologist to see if we can discover why my blood sugars have been so up and down recently.

 

Warning, health hazard ahead

Sometimes I wonder if I should come with a big warning sign. One with flashing lights and sirens, so that people know that I am a walking hazard. But then again, I only really need this sign for myself, as I’m my own worst enemy, a walking disaster just waiting to happen, or more like constantly in progress.

Since I last posted I have managed to get myself into a couple other less than stellar situations. I have managed to most likely have torn some muscles in my right shoulder, on a kids blown up water obstacle course, and later in the week managed to crash a bike at full speed into a tree, and was lucky to walk away with only a couple lovely big bruises. I being who I am, very seldom think of my limitations and boundaries until I have pushed them way to far. Then everyone and their neighbour seems to think it their job to point this out. And although they all mean well, it annoying, and it makes me feel even worse. But in the end, which was much much later, it actually cheered me up, and made me laugh. Why? I thought you were annoyed? Well I came to the conclusion that everyone and their neighbour were just like me, they knew my limits. They knew I had done no exercise, unless walking to the kitchen to get food counts, for more than a year, and that run, jumping and climbing all over an obstacle course and going on biking trails was probably a little bit beyond me and my puny muscle mass (ok I lied, there seems to be no muscles left to be found). But like me it didn’t occur to them until after I had hurt myself, or maybe also like me they just wanted to believe I could do it, both of us just wanted to believe for a couple of hours that I was normal, and for a while I did. I didn’t even think about my arthritis, how tired I was, that my joints felt less than perfect. The minute I climbed onto that inflatable obstacle course, till the second it ended with a bang (because that’s just the way I roll) Juvenile arthritis didn’t exist, it was deleted from the play completely, finally made to watch from the side lines while someone else had fun. Just like me they were quick to warn me that maybe I shouldn’t be trying to impersonate my 13 year old self, maybe I should be a bit more careful, take things slower, build up what I can do, and hopefully some kind of muscle, slowly. They were quick to tell me that although I might feel better, my body was far from what it used to be, and I would do well to remember that. Like me the found hind sight much clearer than foresight. I was not the only one that day that had made a few mistakes, that had forgotten that I was different, should act different. I felt better in the realisation, that I had made a mistake, and the mistake was all mine, but those who were quick to tell me all that I was thinking myself, to warn me of going to fast, of over doing it, did not think of this at the beginning either, did not warn me first, encouraged me to keep going. I felt better in the realisation that I was not alone, that others had trodden here before, even tread with me, and the realisation that this was not the first time I had done this (not even close), and would not be the last. But for now serves as a reminder. For how long we will just have to wait and see.