I was diagnosed with lupus at 17 years of age. Its okay, I didn’t know what it was either.
The internet definition of lupus is, “any of various diseases or conditions marked by inflammation of the skin, especially lupus vulgaris or lupus erythematosus.” Like it says, there are many versions of lupus, such as one commonly known symptom, the butterfly rash, which is a rash that usually spreads out over your nose and cheeks. I am thankful in saying I do not have that. Although, my symptoms were different, and hard to diagnose.
It first started in May 2014. I started to develop chest pain that soon spread to my shoulders and back. The first time I experienced this pain it wasn’t at its most severe. It hurt to do some things but it didn’t consume my life. It wasn’t until the next bout of it that it really became a huge problem.
The first episode lasted a little while, my memory too fuzzy to remember the exact length. The second however was like a punch in the gut and the face at the same time. It hurt to do any normal human function, like cough, sneeze, and even laugh. That was one of the worst. Legitimately fearing the moment someone would make you do something usually out of joy because it hurt so bad. I had to create a way of suppressing my laughter so it was bearable. I’m someone who loves to laugh. I peed my pants more than someone should as a kid, but that’s some other stories for another time.
I remember in that flare up of it I was meant to go to an art fair in a city close to my hometown with my best friend. We were going to stay at her sisters for the night and go in the morning. I remember the fear when I started getting that pain that was becoming too familiar flaring in my chest and to my shoulders. I knew how laying down ignited the unbearable pain in my body and I had to sleep at someone else’s place that night, and at this time in my life I was suffering from some major mental health problems so the thought of staying the night terrified me. The only thing that kept me there was knowing that my family away from family were right beside me.
I don’t remember too much from that trip but I do remember getting no sleep, but that was normal for me because I never slept anymore due to the pain. I only could sleep on my back anyway, in any other position the pain was unbearable.
The next day was the art fair. I had prepared some of my pieces for it, as my friend, her sister and her boyfriend all had our own little booth to sell and show off our art. I was genuinely excited. Until I sat down. And could not stay awake. This wasn’t some ‘I didn’t sleep well’ kind of nap, this was I was out for the entire show and physically couldn’t move. Lupus is a chronic illness, meaning an illness that you will have for life, and any disease of that sort make you extremely tired. And to top that off, I was on heavy doses of lithium for my bipolar disorder which later on we figured out was a very wrong dose and was messing with my mind in really bad ways.
I felt awful for sleeping the entire time. Physically awful, yes, but also very guilty. I don’t remember if I even told them what was going on, but all I wanted to do was go home. At this point in my life being away from my home and my family was really hard for me, and all I wanted was my mom and my aunt Kathy (who lived with me and my mom my whole life, like a second parent). So I called my mom and probably cried on the phone apologizing that she needed to drive 45 minutes to bring me home.
Being the mom that she was, she came and got me, when the plan was to stay for another night with my friends. I think they understood, they knew me and they knew at this point I was having struggles. Shout out to them, they have stuck by me through my entire life and I know they always will. I have known them since I landed in Canada at 6 months old.
On the way home I had one headphone bud in with the Assassin’s Creed 3 soundtrack lulling me into comfort, as that was my current interest as I always seemed to latch on to one thing at a time when I was a kid to obsess over. It was very much a comfort thing for me and looking back, it was probably good I had something like that.
The pain eventually eased with time. Until it didn’t.
It wouldn’t leave my body. At this point, I couldn’t breathe. I had to go turtle speed because any faster it would hurt too much when I would take a breath. I remember my mom and I went shopping in the US once when I was having these flare ups and she made me laugh, and it hurt so bad I couldn’t breathe, which quickly escalated into a panic attack cause breathing to hurt so bad I couldn’t do it. At this point we were trying to get me checked out by every doctor that would listen, getting every test known to man, none knowing what to do with me and one telling me that it was ‘growing pain’.
Eventually my mom had enough, and drove me an hour and a half to London, Ontario where they had better hospitals and one specifically for children (I was still under 18). The night before I had a fever and it was all just getting worse. I packed a bag in case they kept me there overnight and we were off. Getting there and getting checked in is a little fuzzy for me but I do remember them doing an assessment and deciding to admit me. I was terrified at the time but my mom and I knew we needed to get this figured out. We were sat in this little hospital room for what seemed like days, updating Kathy at home and waiting for a bed for me to be available. I remember getting severe chills, the kind that your whole body is violently shaking to no end as they finally found me a room, covering me in a heated blanket while they wheeled me to my next home for the next 10 days.
Being there was tough on 17 year old me. Test after test, needle after needle. A lot of it I don’t remember but there were random clear memories of nurses not being able to find a vein or showing them pictures of my pets at home. I was lucky, there wasn’t a time that my mom or aunt Kathy weren’t there to comfort me. I remember being incredibly itchy and starting to violently thrash around because of it, scaring the crap out of my mom but not being able to stop.
I don’t remember exactly when in my stay they diagnosed me with lupus. But I do remember finally getting out of the hospital. I was now on completely new drugs including a whopping 50mg of prednisone. My family greeted me with open arms, my dog Sadie licking me to death and the two cats Jackson and Molly pretending they were mad at me for leaving. I was glad to be home, but my first night home was weird. I felt like I was gone for months at a time. I remember sitting in my room hearing music that nobody else could hear, my mom reassuring me it was probably because of the change in meds. That night the dark seemed too dark and I started using a night light to try and comfort myself.
The following months of recovery were very difficult. I gained a lot of weight from the medication and my moods were everywhere. I had also lost my grandfather shortly after I was out of the hospital and that was hard on me as well. I was in grade 12 but took the first semester at home because we knew I couldn’t handle being at school yet, mentally or physically. I had lost a lot of contact with my high school friends, and didn’t really see any friends at this point in my life. Thankfully I still saw the one friend mentioned earlier in this story, she has always been at my side.
At this point I had developed some sort of spot on my skin, and it started growing. It was an inflamed red ring around a yellowish center which my family thought it could be ringworm. I got a biopsy done of it and there were no clear signs of what it was, but my nurse practitioner assumed it was a side effect of the lupus, as many people with it experience skin related symptoms. She didn’t think it was anything to worry about so we left it at that. She was right, it didn’t have any negative affect on my health, but then they started to litter my skin on my neck, chest and back. I felt I looked gross. It didn’t help going back to school when everyone teased me for being ‘diseased’.
Thankfully, they went away and I haven’t had trouble with them since.
Here we are, 5 years later, and I still have flare ups, but nothing like I did before. As time went on I had less painful ones, not pain-free but bearable. I’ve lost the weight and am now on 2mg of prednisone, trying to ween myself off as best as I can. Living with lupus can be hell, but it can also be manageable. I take care of myself by taking my medication and not pushing myself too far when I start to feel that familiar pain. I encourage anyone who might be experiencing any similar symptoms to go get checked out by a professional, it might save your life.
At this point in my life, I live a normal life, for someone with lupus, bipolar, and some other bumps in the road. The best thing you can do is take care of yourself and manage your disease the best you can. I realize some people their lupus is active at all times and its not as easy to take care of, but trying your best to stay healthy and listening to your doctors is the best you can do.
Thank you for reading my story. I hope by reading you can realize that you never know what’s going on in someone’s life, and just because you can’t see the disease doesn’t mean it doesn’t exist.