My illness might be invisible but it's certainly not invincible

The past year has been a roller coaster ride. Between moving out, gaining more independence, and working hard in the nursing program I am enrolled in to the anxiety of multiple scans and their results, a brief reprieve when I thought everything might be ok, and then the crushing words from my specialist that the chronic bone infection had indeed returned, I have felt more than my fair share of ups and downs. There were moments when I felt great, filled with life and hope, energy, excitement, just being young and looking forward to all the good things in life to come. On the other hand, there were many moments when I was exhausted and gutted, no energy, pale and sweaty, in pain and feeling a tad bit desperate and that life was unfair. "Why should I be sick... again?" is something I found myself wondering quite often. So comparing the last year physically and emotionally to a roller coaster isn't that farfetched. It's just a roller coaster that never seems to stops and slows down or speeds up without warning. Fortunately, the ride is pretty calm right now, giving me several calm restful months before we plummet down the next hill (the dreaded external fixator...). I am sure the ride will pick up for a while after that.

But at other points this year, time itself crawled by incredibly slowly, like an arduous mountain trek. The days waiting for scan results felt like months as the tension (nervous anticipation?) inside me built. The second hand on the clock seemed to stop as I lay on my bed for hours at a time, doing nothing but staring at the ceiling, exhausted and deflated, wondering why none of the antibiotics I was put on seemed to make things better. Ironically, sometimes those same hours would seem to fly by, back on the roller coaster. I would lose entire afternoons or days doing absolutely nothing. There was the anxiety and fear of surgery and the pain to follow; lying in bed pondering "what if things go wrong?"; and that one question that's always there, lurking at the back of my mind, trying to ignore it but never fully shaking it off "What if the infection comes back anyways?" Pain and worry and fatigue and fear. They make time slow, thick like molasses.

Roller coasters and mountain treks are not so different after all. I can't control either of them; both require me to give up control and go along for the journey or ride; both have their steady climbs and rapid descents; the finish line always hidden behind the next crest. That is how chronic osteomyelitis makes me feel. It makes me feel like I don't have control over my life; that I am at the mercy of this horrible thing that I can't even see, something inside me. Most of all, it makes me feel invisible and vulnerable, like I have been defeated.

Chronic osteomyelitis is invisible. If you saw me right now your first conclusion would probably be that I broke my leg, thanks to my cast and crutches. If you see me in two months, it would be safe for you to assume, thanks to the external fixator, that I have been in some horrible accident. But if you saw me a month ago, just before surgery, you couldn't tell at all. You might say I looked tired and you would be correct, but you wouldn't be able to tell that I was really sick. You wouldn't know what was wrong with me about a month before that, when I was getting a PICC line put in. Or five month prior when I burst into tears walking out of the fracture clinic after hearing my surgeon say "What the... what is that?" when he looked at my MRI scan results, or the month before that as I anxiously sat by the phone waiting for Bone scan and CBC scan results. The nurses at my clinical placement couldn't tell what was wrong with me either. They could tell I was pretty exhausted, that I left early several times due to fatigue, that I missed part of a shift to take myself to the ER, that my clinical instructor sent me home one morning because I looked so ill, that I stopped going to clinical halfway through the semester, but they didn't know what was wrong. During one shift, I was talking with the nurse I was working with about a patient with osteomyelitis. I quietly said "I have that, chronic osteomyelitis". The nurse looked at me incredulous and said "really?" Her disbelief was clear. Acute osteomyelitis is uncommon as is, let alone the chronic form... People expect to see me limping, or unable to walk at all without excruciating pain, not a vibrant young woman in school and completing twelve hour shifts on my feet. And most of my classmates didn't take me seriously; they thought I was being dramatic, over exaggerating; or maybe they just couldn't understand, they are all so young and healthy... invincible. Only the older one's understood; the ones who had witnessed friends/family go through illness, or been ill themselves. Chronic osteomyelitis is invisible. People do not understand it because it is invisible and not well known, it is not common like cancer or kidney disease; they don't understand how much it impacts my life because the way I look does not match their ideas about what 'sick' looks like.

Chronic osteomyelitis is invisible in other ways. I don't expect people to know what bone infections are and how they can impact a person's life. It would be unfair to expect that of my friends and even family members I don't regularly see; it is completely unfamiliar to them, often unheard of, so why should they know about it? But I had hoped that my friends would actually care about me. It is amazing, once the semester ended, I moved back home, and I had surgery, how quickly my friends stopped talking with me. Only one friend came to visit me in the hospital; several friends texted me for about a week post surgery, but that slowly trickled to a stop; now most people don't even respond when I send them a text, asking them how they are doing or enjoying their new clinical placements. No one ever spontaneously messages me. It is amazing how quickly a person falls out of their social group when they can no longer participate. I thought that I had made several good friends throughout the last two semesters, people I spent almost every weekday with for eight months. We studied together; went out for tea/lunch; went to the mall; hung out between classes; talked about our lives, families, past experiences, hopes and dreams. At the start of the program, the course coordinator said that our clinical groups would become like family, and that we would remain friends with those people for the rest of our lives. I believed her, all those early mornings we spent chatting on the bus, bleary eyed and eating our breakfasts, the lunches spent laughing in the cafeteria, helping each other de-stress during exams, celebrating passing our clinical exams. It doesn't feel like that anymore. In a matter of 2-3 weeks I was no longer part of the group. The same thing happened in 2012 when I took time off from university to have surgery, and even in 2008 when I missed the first month of grade eleven.

I feel invisible. I can no longer partake in society the way that I used to. As mentioned above, most of the people I thought were good friends weren't really friends at all. People ask what happened to my leg, but they don't really want to hear the answer when I tell them it is more than just a broken bone. When they ask how I am doing, they expect to hear the typical response "I am good". People stared at me when I had the PICC line, they stare at me now with the cast and crutches, and they will stare even more once I get the external fixator. They look at me like I am different; I can see them eyeing me up and down, their questions pass behind their eyes but never reach their lips, they glance away when they notice me staring back. Being different sets you apart because people fear the unknown. Talking about my health reminds them of their own mortality and vulnerability, and most people can't handle that. Therefore, they ignore. So I feel invisible. Aside from that, I don't have the energy to do much outside the house, so that makes it difficult to be social.

Invisible and defeated. The bone infection went undiagnosed for many years. My surgeon at the time refused to believe that anything was wrong and ultimately told me not to come back to see him; my family doctor shrugged off my concerns and told me to stop worrying. The road to a diagnosis was long and tiring. At that point I had already had two surgeries, years of pain, swelling, sinus tracts on my shin, inconclusive scan results, and fatigue. When I was diagnosed we hoped that oral medication would be enough, hoping with every set of new scans for healing and improvement. Six months later there was surgery number three and two months of IV antibiotics, then more scans and oral medication. Sixteen months of treatment in total and I was exhausted. Then slowly the return to normal life, like coming up for air after a deep dive, convincing myself that the infection was gone, that every ache and pain was not a bad sign, regaining strength and confidence; getting a job, graduating university. Life was good! And then the signs that something was amiss slowly returned. I remember convincing myself that it was nothing and that my leg was ok, only to be followed by the realization that something was quite wrong and that I needed to go back to my specialist. Then followed the appointments and scans that ultimately confirmed the relapse. But only after I had been given the all clear first. Then being told that I should wait to have surgery until after I graduate. There was hope that I could just finish school and get a job like my classmates/friends. Followed by the worsening of symptoms and feeling worse than I have ever felt in my life. IV antibiotics. Exhaustion, Pain. Surgery number four. And now the hope that the doctors, my doctors, can fix me, paired with the fear and worry that the infection will come back anyways. But I am not convinced. I have been at this point before, hoping and hoping and hoping, wishing I was better. It was a long road to better, but I eventually did get there, only for it to be snatched away a year and a half later. I feel defeated. How much more can I handle before I can't take anymore? Where is that line drawn and can it be moved if need be? How much do I have to fight before I can't fight anymore?

Invisible and vulnerable and defeated. Young people often feel invulnerable, untouchable. They think bad things only happy to other people. But I know that they do... I have experienced it firsthand. I felt to incredibly vulnerable when I was diagnosed in 2011, and even more so once I had been told that the infection was gone, worrying about any and all pain I experienced in my leg. And then I got better and life was back on track. I was on a marathon with a clear finish line. Then the infection returned and relapse, that ugly word, was used. Now I am on a mountainous trek with no end in sight. Life is fragile and health can easily be lost. It is much harder to get it back than it is too lose it. And it is harder still to regain confidence in that newly found health. If I can have a chronic bone infection for ten years, what else can still happen in my lifetime?

My relapse has given me a lot of quiet time; time I inevitably use to think about everything I have been through. It is easy to feel sorry for yourself and question "Why me?" or to wonder what the future will bring. But going through hard things and having plenty of time alone provide tremendous opportunities to learn about yourself. I know that I feel invisible and vulnerable and defeated. These are all valid feelings. There would probably be something wrong if I didn't feel these things. But it is too easy to give in to them. They are my feelings, but they are not the only things that matter in my life. I feel defeated, but being ill teaches you to be courageous, how to face something you are absolutely dreading and do it with a smile anyways. It teaches you kindness and compassion and empathy; that there is always hope and a reason to keep fighting. I feel invisible, and perhaps in some regard I am, but I have joined online support groups and made connections with people who I consider to be real friends, who care about how I am doing, message me when I have been offline for a while, offer words of comfort when I struggle, and vice versa. Some of these people have been through what I am now going through; they completely understand it and see the bone infection for what it is and its influence on my life. I have joined other online groups not related to medical issue just for the fun of 'meeting' (e.g., chat online) new people. And I feel vulnerable, but facing the infection and the aftermath of the relapse doesn't have to mean fearing the infection/potential relapse for the rest of my life or cocooning myself in my safe little room from everything that is dangerous to my health or could use up my energy. I still have to live, and that means getting over my feelings of vulnerability. I feel better and accomplish some of the things I want to do when I believe that I can get better. The infection hasn't affect my ability to think and read and do crafts and write so it should not stop me from doing all of these things that I love so much. Most of all, the infection has taught me that there is more to life than the rat race so many people seem to be running or always planning for the future. Life is about being happy, taking pleasure in the little things, surrounding yourself with good things and friends. It is about being content. The last few months really sucked; they were exhausting, stressful, and full of pain and worry. But I have realized something. Whether I am sitting in a comfy chair, leg propped up in front of me, cuppa tea at my side, working peacefully at a cross stitch project or reading a magazine or hunched over a medical textbook studying for a test or learning new skills in clinical, I still have to find happiness. I can sit at home stressed out about my leg as easily as I can drive myself nuts worrying about some test or another. Or I can choose to do something different - despite moments of vulnerability and defeat and loneliness, which are all valid feelings, finding happiness is what makes the now good and give me hope for the future, a reason to keep going, and doing that is a choice within me.

So at times I feel invisible and vulnerable and defeated. But my battle, and it truly feels like a battle some days, with chronic osteomyelitis has uncovered a strength inside myself that I didn't know I had - the ability to keep going and to be brave even when things are hard or painful or full of uncertainty. I keep fighting because happiness is a choice. People might not be able to see what I am going through when they look at me and they might not understand it if I explain it to them, and I might feel vulnerable and defeated right now because of the relapse and the surgeries and uncertainty still to come over the next months, but the infection is not invincible. I can't control whether the infection comes back again or not, but regardless of how things play out with me health wise, I can choose to be happy. And in that way, I can defeat my chronic osteomyelitis. Just like chronic osteomyelitis, my fight to remain happy and hopeful is invisible, but it there non-the-less. Regardless of what happens, I liked to think that I will be smiling in the end. And that smile is anything but invisible =)