Allison – Diagnosed With JIA

Q:    How old were you when you were diagnosed with JIA?

A:     I was diagnosed with Juvenile Idiopathic Arthritis in the summer of 1998 at 12 years old.  Although I do not remember the onset of symptoms (my parents have told me of the sudden inflammation in my fingers, toes, wrists, and knees), I do recall that the months following a diagnosis of JIA were tough for both my parents and myself.  Mornings were particularly difficult.  At 12 I had a hard time allowing my mom to brush my hair because my hands were too painful and swollen for me to do so myself.  Being forced to relinquish control of such routine activities was as difficult as the physical pain itself.

Fortunately, I responded well to medications including methotrexate and later etanercept and within 2 years I was able to return to a fairly normal pattern of daily activity.  Of course normal took on a different meaning, where my JIA oscillated from being well managed to actively flaring.  During these flares I wore wrist splits to aid with writing and went through several rounds of steroid injections.  I moved from taking methotrexate orally to injecting, which I hated.  Even now, I very much dislike giving myself a weekly dose of etanercept by injection.  And believe me, the push button device they now have is vastly superior to the syringes and vials I had to mess with as a teenager.

Always, I have to be cognizant that I get enough rest, eat well, and keep active.  The former is the hardest for me, as I like to be on the move and have a tendency to spread myself too thin.  Today, I consider myself splendidly healthy 95% of the time.  That other 5%, when my JIA flares, I am very fatigued and I get a new surprise each time as to what will be the active symptom: tendonitis in my forearm, swelling in an ankle (which has never been an active joint), heel spurs, you name it.  This is the unpredictable nature of JIA for me, which I try to approach with a good sense of humor and to remember always that it could be much worse.


Q: How has being physically active been important to you – a young person with arthritis?

A:    As a teenager with JIA I felt very different than my peers.  To be honest, I felt weird and inferior.  I let only very close friends know that I had JIA and chose not to become involved in the community of people with arthritis.  I would never have dreamed of sharing my story in this way until very recently.

Sport provided an outlet where I felt more like my peers.  This did not happen with all sports; for example I felt ostracized for not playing volleyball in junior high school phys ed because of my inflamed wrists (in hind sight, I was really the only one who cared I couldn’t play…).  However, it did happen with rowing.  Rowing is a beautiful, low impact, aerobic sport, where I met wonderful and encouraging people.  The aim in rowing is to move yourself across the water faster than other people.  You do this by being fitter and more technically proficient than your competitors, and by being able to endure the large amounts of physical pain brought on by pushing your body to its limits.  JIA prepared me well for the latter.

I also gained a great deal of confidence through my involvement with sport, and rowing in particular.  When I started rowing I was concerned that my JIA would prevent me from being as good as the other kids.  However, this was not the case.  In fact, after putting in the training time, I was actually able to beat my peers on the water.  This was huge for me.  Accomplishment in rowing gave me a feeling of self-efficacy and control over my body, which had been lacking as a result the often uncontrollable nature of JIA.


Q:    What is the best thing that has happened to you because of your involvement in sport?

A:    There are a few.  First and most importantly is disease management – I am better able to manage my arthritis because of my high level of physical activity.  Being an athlete, I value my health a great deal and I work hard to maintain it.  Years of training have taught me to know my body and to listen to what my body needs at any given time, both with training and JIA.

Second, my involvement in sport gave me a sense of identity, particularly at a time when I was struggling with who I was as a young person with a chronic disease.  I started rowing at age 14, 2 years after I was diagnosed with JIA.  During my visits to the IWK Health Centre in Halifax, the wonderful rheumatology team would ask me about my rowing in addition to asking me about my arthritis.  It felt good to seen by people in this medical community as having an identity separate from my disease status.  Telling them about my training and success in competition made me feel that I had things under control.

Third, sport opened up huge opportunities for me in general.  After winning various rowing events at regattas in Atlantic Canada, I was invited to train with the Canadian Junior National Development team in Ottawa in the summer of 2003.  From 2004-2008 I attended the University of Virginia on an athletic scholarship in rowing.  Throughout my involvement with sport I have met many wonderful friends and inspiring individuals and have been able to travel and explore in ways that would otherwise not have been possible.


Q:    What motivates you to be active on days that you do not feel like it?

A:     Physical activity is a lifeline for me – I feel so much better when I am active.

It helps when I am tired or sluggish, when I am feeling restless, when my joints are stiff and sore, and when I am feeling blue.  It is the best and healthiest combatant I have found against these ails.  That is not to say that I don’t have moments when I do not feel like putting on my running shoes to head out in the cold morning rain – a scenario with which we Vancouverites are all too familiar.  In these moments of hesitation I tell my present self to remember how much better my future self will feel if I put on those running shoes.  She will return happier, energized, and refreshed.  She will also have better long-term health and wellness outcomes.  And off I go.  Well, most of the time.


Q:    What advice would you give to kids with JIA to increase their physical activity?

A:     It is very important that you find a type of physical activity that you enjoy doing; you have to find what works for you.  You are not going to do something if you don’t enjoy doing it.  Different people enjoy different things.  I have a hard time understanding why people enjoy playing tennis or hockey because I personally do not.  However, others can’t understand how I get so much enjoyment from running.  To each their own, but make sure that you find your own.

The type of physical activity in which you choose to participate will have to accommodate your current JIA status and your personal preferences.  For me, my JIA is well-controlled 95% of the time with etanercept and methotrexate, and I like long-distance aerobic activities.  I ended my rowing career in 2008 when I graduated from the University of Virginia, but have since become an avid runner.  I am currently training for half marathons.  I accept that someday I may not be able to make running my sport of choice, either as a result of arthritis or otherwise.  When this time comes I will look to other lower-impact activities to fill the void: cycling or swimming are likely options.  As a person with JIA, I accept that my disease places certain limitations on my level and type of physical activity.  I approach this honestly and openly, and with a good sense of humor.  I encourage you to do the same: ask yourself what you like to do and what you can do.  Embrace the challenge.