By Preet Bhogal
I went through a lot of versions of this piece. I narrated it, wrote it longhand, typed it on my laptop, even jotted down notes on my phone but nothing felt right. I thought of how I wanted to say it then questioned myself and started over completely. I took a lot of breaks to check Facebook, the latest celebrity gossip, and watch reruns of the Simpsons. I even took a break from taking a break to read up on the psychology of procrastination. During this whole process all I really learned were trivialities about Facebook friends and celebrities, and that I have way too many episodes of The Simpsons memorized.
I still had not written a damn thing about my experience as a patient with a lifelong skin condition.
And I have a lot to write about because I have over thirty years of experience as a patient suffering from a chronic skin condition. I mean, the first symptoms of my eczema appeared when Joe Clark was Prime Minister! That was a pretty long time ago. The Simpsons weren’t even in reruns! There were new episodes of The Jeffersons! Madonna’s first album wasn’t even out yet!
There is so much to talk about I was stuck. So what I have decided to do, for this first piece, is share some great medical news that I received this month.
Quickly, the simple facts are that I am a thirty-two year old male and the severe eczema that I suffered from most of my life required me to be on a corticosteroid called Prednisone until I was around thirteen years old. The hope was that I would be off the medication before there were any long-term side effects but by then it was too late. My growth and bone development had already been affected. It is likely that genetics may have wanted one thing but the Predinisone overruled: I was never going to be much bigger than I was at thirteen years old.
Aside from the pleasantly economical side effect of still being able to wear jeans from Gap Kids, over the years I discovered that the drugs had some other long-term side effects. My teeth were terribly crooked and my glasses were rather thick (braces and contact lenses fixed that). There was a risk that I was going to develop glaucoma at an early age (I have be checked for that every eye check-up). But of all the effects, the most concerning was the very real risk I could develop osteoporosis in my hip and lower spine at a relatively young age.
So, when I was about twenty-seven years old I underwent a bone density scan. The test came back positive for osteopenia, which the doctor informed me was basically the beginning stage of osteoporosis. Fossomax was prescribed with the hope that it would rebuild the bone density and slow down the inevitable march towards premature old age. So now I was on drugs to counter the side-effects of other drugs. Drugs that themselves would have side-effects.
I worried about falling down on the ice running for the bus during rush hour and ending up in an ambulance instead. I started looking up wheelchair models and wondering if there were designer ones. (Did they make Alfa Romeo wheelchairs?) That commercial with the old woman on the ground going “I’ve fallen and I can’t get up!” began to scare the hell out of me. I would stay in the house for days at a time lying on the couch mindlessly staring at the television, too busy ruminating to worry if The Simpsons or The Jeffersons were on. I felt very old but I was still young enough that I worried about tripping on the dance floor at the club and breaking a hip. That would have been hot. I was going to be alone forever.
Fortunately, by the time of all this my eczema had cleared up significantly partly because of a new cream. Nevertheless, my eczema was (and still is) a major force in my life because one of the major triggers is emotional stress.
My depression got worse as did my substance abuse (and so did my eczema). Somewhere along the way I got it into my head that there wasn’t a lot of time left so I might as well make the most of it (the absurd rationale eluded me). Eventually, in a story for another time, I landed in the hospital again but this time it was for mental health issues instead of my eczema. It was time to make major changes in my life.
I knew nothing would cure my health issues but I did know that I could not take a passive attitude towards life anymore, unless I wanted to be miserable forever. So, with support from family and friends (especially my oldest sister, who let me live with her for a year and helped me more than words can express) I made some major changes. I started eating healthy. I started taking medication and supplements on schedule. I started exercising and being active.
Despite the fact that I was always hyperaware of what would make me ill I was not very aware of what would make me well.
Illness has a way of making one both hyperaware and oblivious of your own body.
After about a year of living with my sister I left Toronto to finish the degree I had started over a decade earlier at Dalhousie University, in Halifax. In December 2011 I finally completed a Bachelor of Arts in English and Political Science.
I came back to Toronto this year and went for another bone density scan a few weeks ago. It was my first one since June 2009.
My family doctor informed that my bone density reading is in the normal range for a male of my age and weight. My risk of fracture has gone from ‘moderate’ to ‘very low’. I did not have to take Fossomax anymore.
I was speechless. Working out at the gym, spending hours reading about different ways to isolate certain muscles, and forcing myself to drink unappealing weight gain drinks had all been worth it! I felt empowered in a new way. I found myself acting silly and making jokes to my friends about wiggling and hips not lying. There was just the tiniest hint of a bounce in my step.
After spending the last few years (and longer, since even as a child I knew that osteoporosis was a risk) certain that I would be the proud owner of a shiny new steel hip before I started collecting a pension, this was a lot to process. My future looked a little different.
Going to the gym is just a little more satisfying.
I feel just a tiny bit more self-possessed.
My entire life has been dominated by my skin condition, and it always will be. I still have to moisturize all the time. I still have to be vigilant about what clothes I wear and what detergent to use. I am still way too insecure to take my shirt off in public. I hate the extreme heat in the summertime because it makes me itchy, so does the extreme cold in the winter. Sometimes this stupid spot under my knee gets so itchy that it makes me crazy. I’ve learned to accept that these little facts are all just a part of who I am as anything else.
And that is totally, and completely, fine.