The Girl With Arthritis

     A month ago, I remember putting my hand over my heart; I could feel it racing, pounding, and skipping beats. It was worn and tired, and so was I. The weeks leading up to that moment were brutal. For six weeks, I was lucky to get four hours of sleep most nights, and all my waking hours were spent stressed and working intensely for finals. Most days, I didn’t really talk to anyone and I skipped meals to accommodate more working hours. Ultimately, I was running myself into the ground. And I didn’t care.      But then came that moment, when I realized my heart was struggling from the stress. A long night in the emergency room made me stop working for the first time since March, and forced me to be still and reflect on my actions. I stared at the monitor that showed a heart that was trying so hard to slow down, and I thought about how cruel I’ve been to it.      It’s been an extremely hard year. I would love to sugar coat that statem...

"If you actually have arthritis, doesn't it hurt to walk?" That was how the conversation went. I didn't know it at the time, but I had opened up a Pandora's box. Someone ( I'm not disclosing this persons name or relation to me) had just asked me about having arthritis: They heard me mentioning it to someone else. I'm usually honest about my diagnosis, so I told them I live with arthritis caused by the immune system. They asked how I deal with it, so I told them I take immunosuppressants and try to stay active. This person is very pushy and nosy, and I suspect a bit overdramatic. They continued to question me, as if making me prove something. They said, "so the pain isn't all the time?" And I said, "No, it's constant." I was asked, "but if you actually have arthritis, doesn't it hurt to walk?" And I said, "Yes." "Then why...?" "Because either I walk or I live in a wheelchair."...

I try to stay very active in the community of fellow autoimmune disease owners. I'm actually part of a group on Facebook (My Immune System Hates Me) for young people who own autoimmune diseases. I really love being a part of it: Even though I'm not very active on it, I've really gotten to know everyone and I really care about them. My heart breaks for them, too. As just the other day, my heart was torn in two for one. Though I won't say who for privacy reasons, this person talked about graduating university just the previous year with hopes of going on to a bright future. However, she is now struggling a lot with her health and it's so hard for her to get by day to day. It's amazing how fast your life can flip. Scratch that, it's scary how fast your life can flip. Especially when you're only so young. Life doesn't get to be put on pause until you can feel better- time keeps ticking and dreams collect dust. I think it's funny how our brains are...

Whenever I'm introduced to a new doctor or present doctors with new, odd symptoms, my mum likes to tell them "she's going to give you a run for your money." That's completely accurate. Most times, doctors can't figure out what's wrong with me- at least, not for the first two visits. I think the only time I ever got a diagnosis in one doctors appointment was for a classic case of bronchitis (that I walked around with for a month or so because I just didn't want to see another doctor). And I know I'm not alone in that either. Lots of people I know walk around for years not knowing what's wrong with them. I went about a decade. I know a lot of GPs are not able or don't know how to properly treat many autoimmune and other chronic illnesses, but I can't understand why patients aren't refered to specialists faster. It's cruel to make someone suffer and ignore it. I also hate when specialists dismiss patients quickly. Maybe it's ...

I find it funny how adults preach to children that they should treat those with disabilities no differently from others, however adults tend to do the opposite. When I tell my peers about being chronically ill, I don't usually get treated differently after. It does happen, and sometimes it's with extra consideration. It's really nice. Adults, on the other hand, usually treat me differently from others. Occasionally it's just to make sure I'm doing okay, which is always appreciated. Other times it's as if they don't believe me. But more often than not, it's just different from other kids. Adults are often surprised I lead a more normal life than they expect. I would like to set the record straight: People with chronic illnesses are normal people.  I'm not a hypochondriac. I'm not a saint. I'm not looking for attention. I'm a teenager with a chronic illness. I'm a girl who loves her friends. I think homework is the bane of exis...

I was about eleven when I began being treated for juvenile arthritis. As clever as I was at eleven, I didn't understand everything. Sometimes I wish doctors would sit there and tell you more, or at least give you a little pamphlet called "All the Things I Don't Explain." Even if I was beginning treatment and diagnosis now, I wouldn't have known these things. And I admit I'm still learning. 1. We're Not Treating Symptoms. We're Treating a Disease. Treating the symptoms doesn't treat the disease, but treating the disease does treat symptoms. It may not mean your symptoms are relieved for a long time, but it could mean that damage is prevented. For example, if your doctor says it could take six months for a medicine to take full effect it means that you're body will be completely using the drug against the disease. It doesn't mean your symptoms will completely disappear by that point. I really wish they explained that. 2. This disease is...

Last year, I did an eight week course. It was an art class almost every Saturday morning, from mid October to December. I really did enjoy the class: It was a lot of fun! I made friends within the class and got a lot of good artistic advice, and even more confidence in my work. I don't regret doing the class what so ever. My body, on the other hand, hated it very much. I tend to be busy over the week (and by 'busy,' I mean going to school, coming home and doing homework in bed). But those weeks were extremely busy for me: Things started popping up from nowhere! It was a bit more than I could handle. There was actually a point when I became so stressed out that accidentally spilling coffee on some paperwork I was supposed to be sending out sent me into a hysterical screaming fit. Mentally, I was breaking down. But the physical toll was much more intense. I lost my Saturdays to recover from school since I was out of the house by six thirty in the morning (just like every...

Driving is probably the most common form of transportation. Most people learn when they're a teenager, and learning is a rite of passage for many young people. And though it's considered to be a very easy, common thing to do, a few don't agree one hundred per cent. Think about the physical act of driving. Your legs are stretched out in front of you and you have to keep control of the pressure you have on them to control the pedals. Your arms are stretched out in front of you to steer. And let's not forget turning your head to look around. And if you're backing up, let's not forget the painful twisting and turning there! It can be really intense and take a lot out of you! Driving for some is really painful. Some will say you're very lazy if you don't want to drive, or if you never were able to learn. I beg to differ. It's very hard to force yourself to do something that causes pain. It can also make you feel very unsafe: we know pain can be extrem...

 "Do you fight this disease or do you live with it?" I was recently presented with this question. And to be quite honest, I gave no answer. I had to think about it for a while before I could answer it.  Chronic illnesses are very complicated by nature. When you're diagnosed with an illness that is serious and are told that there are only treatments to try to control it, it's devastating. That diagnosis can make your life flip, even if the symptoms already seemed to turn the world upside down. It can be confusing and there are even times you might not know what's really going on. But if there is anything I remember clearly from the time of my diagnosis, it was discussing treatment options that can making living with arthritis easier. There was little talk of fighting, so to speak. I think a lot of the time we use the terms "living with," "deal with" or "try to control" to describe what treatment for chronic illnesses are ...

Oh, to be young and rested... Wait, that's a total contradiction. From what I'm told, young people usually live perfectly fine off borrowed energy, caffine and crashing at two in the morning until they're tweety five-ish. That seems about right to be honest. Except in the cases of if you have some sort of autoimmune pain disease: You still live off borrowed energy, caffine and falling asleep at two in the morning (and probably some medicines) but you tend to flare, be miserable and lots of other 'fun' things. Oh, to be young and chronically ill. I'm a jealous person. I'm jealous that a week of school and Christmas shopping takes a lot out of me. I'm jealous there are days I'm doing work in bed or on my couch because I can't muster the strength to sit up correctly. I'm jealous that although I can and will push myself to go and do things, I often end up very painful and tired after (but never regretful). For goodness sakes, I'm jealous I ...