What it’s like to have Juvenile Arthritis…

I am incredibly open about my life with the exception of one significant area.  For whatever reason I rarely talk about my arthritis.  When it comes up people are usually surprised. In an effort to talk about it more and process its impact on my life I wanted to write at least one post on what it has been like so far to grow up with it and how it is impacting my life now.

I started experiencing pain in my ankles when I was six.  I continued to have pain which that was misdiagnosed as one thing or another, the most common one simply being growing pains, for the next two years.  When I was eight however my pinky toe swelled up twice its size.  We initially feared it was broken, or that my baseball cleats were too tight. The doctors did blood work in case it was something else…arthritis was brought up as an extremely remote possibility.

Two weeks later I was diagnosed with ankylosing spondylitis, a form of juvenile arthritis.

Arthritis can be caused from a variety of reasons, but one of them is an auto-immune disease that is genetic.  People who are carriers for this genetic defect obviously have it from birth but it usually does not develop until much later in life.  Juvenile arthritis, for whatever reason, sets in early.  It is possible that the reason it set in early for me was as a psychosomatic response to the abuse that was happening in my home during this time, but there’s no way to know for sure.

My particular kind of arthritis is common to young adult males, but it usually sets in after adolescence.  It normally causes pain primarily in the lower back, though mine started in the ankles, and knees before finally making its way up to my lower back.  While it is not nearly as painful or aggressive as other types of arthritis there is one huge danger: bone fusion.  If I do not maintain my mobility there is a very real danger that my joints will fuse together.  This has already happened to some degree in my spine and the X-rays of my upper back do not show clearly separated spinal joints but a “carrot stick” looking single piece of bone that represents the permanent loss of mobility. Once this has set in, there is no remedy for it.  In a double-bind of sorts I have to continue to exercise, stretch, and flex joints that are painful to do so, or permanently lose mobility in them.  As the bodies natural reflex is to shy away from pain I have to very intentionally do this, and I am very bad at disciplining myself to do so.  If have developed a sort of unconscious tick in that I often flex or rotate my neck and back in an attempt to counteract the effects of this stiffness.

As a young child my diagnosis was very difficult for me to comprehend and understand.  It really rocked my faith and I started to significantly struggle with theodicy at a very young age.  I retreated from everything, especially anything physical, as a result of my diagnosis.  After an arthritis conference my mother informed me of the message of one of the speakers who encouraged arthritic youth to accept their limitations and adjust their lives.  I subsequently quit all my sports, not because they were too physically difficult for me but because I thought that this was “accepting my limitations.” 

On the playground growing up I was slower than other kids, never ran as fast, jumped as high, or competed as well.  I was not the last pick for sports teams but I became riddled with self doubt.  Did I suck at these games because I sucked at these games or because of my arthritis?  If the playing field was level, and I didn’t have arthritis, how would I really measure up to my peers?  I dealt with these fears and insecurities by never fully applying myself, so that I could always say, “Well if I really tried…I would have won…” I also latched onto the belief that no matter who you are or what you are doing, there is always someone better than you.  Since this time, I have never been that competitive, if I ever was in the first place.

I also felt incredibly isolated and different from every other child.  I had an “old person’s” disease and this led to extreme feelings of “otherness”. I was already retreating from relationships and living inwardly in a fantasy world to avoid the abuse in my family and this only further encouraged that behavior.  It is no surprise I so readily adopted the role of Lost Child in my family and hid from the world and people in videogames, books, and my fantasy world.

I began to take medicine twice a day for my pain but this had side effects. It was very rough on my stomach and I had to routinely get blood tests done to monitor how my body was accepting the medication and my kidneys were not being damaged.  While initially I cried a lot when I was having a needle put into my arm I quickly got used to it and to this day have absolutely no problem with needles or injections.  I remember once taking pride in the fact that I could swallow my pills whole, without them being crushed up in yogurt.  It really saddens me to think that this is what I had to be proud about as a young child.

Even with all this the pain was managed, not eliminated.  The pain ebbed and flowed.  In extreme situations, where a variety of factors compounded one another, I would be in so much pain I could not move effectively or even sleep.  I toss and turn a lot in my sleep to try to find a comfortable position but usually this doesn’t prevent me from sleeping.

I had routine check ups at the local hospital and would twice a year have to go to UCSF to visit arthritis specialists.  In retrospect these were the worst parts of having juvenile arthritis.  While I understand their intentions were good and my doctors were there to help me, I would be brought into a room, have a doctor visit and then have several interns come in.  While this was part of their training as pediatricians and/or rhuematologists, their poking and proding, and the sheer number of them made me feel like a lab rat and a space alien.

In middle school I developed an eye condition called iritis (uveitis). 20% of the people with my arthritis have this eye-condition and I am one of them.  I have had several bouts of irits in both eyes over the years and this has subsequently diminished my vision.  I am also now totally insensitive to bright lights being shone in my eyes as I got used to the routine eye-examines where this is the only way they can look into your eye to see what is going on.

When I became passionate about joining the military I realized very quickly my arthritis would prevent me from enlisting but I persistently pursued this path.  When I got back into sports in high school and began to exercise more I found I could do things that other people did, it just required more of me.  I remember breaking an 8:00 minute mile for the first time in my life in high school and feeling like this (sorry, just needed to throw some humor in).  Point being I realized that I could do a lot more physical things than I thought I could, and I had been limiting myself needlessly. During this time I did not have a great sense of my physical limitations and in many ways was attempt to escape my arthritis through extreme physical performance.  I lied to myself saying that, “If I could just perform ‘enough’ the military might overlook my arthritis.” I really tried to push myself physically too far, often to the breaking point. The line between physical exercise and self-harm became incredibly blurred and often I would exercise not despite the pain but because of the pain.  At one time I threw away all of my arthritis medicine and continued to exercise as I had before.  Eventually I let go of my plans to join the military and came back to a more sane attitude towards my body.

After college I had a flare up of iritis that went over a year long during the Bad Old Days and I developed Glaucoma as a result.  The surgery to solve this Glaucoma after trying everything else was a rock-bottom for me in my struggle with faith, and part of what opened me up to attending Celebrate Recovery.  While the surgery went well I have nerve damage in my left eye that is not correctable and I will have to have more eye surgeries in the future.

Currently I am incredibly blessed.  While I did not go into the military I did return to sports and become more physically active in general and am lucky to be so active.  Most people with my arthritis are in incredible pain.  There are kids who are in wheelchairs not because their legs do not work, but because the pain of walking is so great.  I am able to run 5k’s and am not really limited in my physical activity beyond the pain that I have to work through.  I have developed an incredibly high pain tolerance over the years from dealing with chronic pain and can push through the minor aches and pains I need to to stay active.  Currently I am on a new medicine that I inject twice twice a month.  It is some serious science fiction medicine that will hopefully actively fight against the bone fusion which is my greatest fear, though it comes with some incredibly extreme but incredibly rare side effects…like leukemia.  So far everything has been fine and my pain has been well managed.

I do not talk about these issues that much for two main reasons.  First of all, my physical health can be a source of despair for me.  In some ways I feel fated to slowly losing more and more of my body to my arthritis and my vision to my iritis.  While I know many people have body issues and lose their vision, it’s more the sense of knowing that gets me. Medical check-ups for me are not times where I get treated and get healthy, its where I found out how bad it is going to be or if I dodged a bullet…for the time being.

Second, to some degree, after twenty years of chronic pain, I have come to peace with my arthritis.  Sometime in high school I accepted that God would not heal my arthritis, no matter how hard I prayed, who annointed me with oil, or the quality of my faith.  I believe I will struggle with my health issues until the day that I die and that is okay.  The question and complaint of, “Why me!?” has very recently been replaced with the question of, “Why not me?” We are not promised perfect physical health in this life, and God does not miraculously cure every disease for every Christian, but we are promised bodies in the Resurrection that will not know pain, disease or death.

Overall things are okay. While at times I am starkly reminded of my situation and in the moment this can be overwhelming emotionally, I am increasingly comfortable within my own skin and accepting of myself and even the difficulties I’ve had along the way.

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About Speakfaithfully

I am figuring out life and faith and taking other people along with me on my journey. Sometimes as fellow travelers, sometimes as hostages.
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8 Responses to What it’s like to have Juvenile Arthritis…

  1. ashleymccleery says:

    Powerful. I am inspired by the “Why not me?” Not sure I’m there yet, though.

    • I have suffered from Still’s Decease since a wee baby, it is really Juvenile Rheumatoid Arthritis. Half of my joints have been replaced, and I lost one of my legs through RA.I have never been in remission, but because my life has been continuous pain I don’t know anything else. I laugh about my misgivings, and very rarely talk,my arthritis. I have a wonderful husband, guess I am lucky I have a sense of humour, or the pain would just take over. If anyone would like to talk to me, I would be only to happy to do so.

  2. Matt says:

    Hi. Thanks for writing such a honest and detailed piece about JRA. I myself have suffered with it for the past 3 years and with no sign of it going into remission, not being able to exercise, not being the fit, active person I was… It sucks. It was good to empathise with someone else who knows what its like. Thanks again.
    Matt.

    • Kevin says:

      Matt,

      Hey I am glad you came across my blog and my post. I tend not to write about my experience because I resist having it define me and it is not the first thing people notice about me. I wrote hoping to be more honest with this aspect of my life that I have carried an irrational shame over and also hoped it might strike a chord with others who have gone or are going through a similar situation. There are now many people who write and talk about this in online communities so know you are not alone and can always find people to talk to about it. One of the hardest things for me was just feeling totally unique with it. I never met another youth with juvenile arthritis in the natural flow of life until I was in my mid 20’s.

      Also, I have been very lucky to either have developed a high pain tolerance, responded well to medicine, been blessed by God, or have maintained my level of fitness enough to where exercising is still a possibility for me. I am considering running a 5k or other race for a juvenile arthritis foundation in an effort to give back and raise money and awareness. We’ll see how that goes.

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