My Journey with Arthritis

It's always hard for me to talk about my journey with arthritis because 1) I don't often want to talk about it, 2) I don't know if people want to hear about my health problems, and 3) it impacts my life so deeply that it's difficult to put into words.  This is my attempt.

In the spring of 2017, I went on a trip to visit some college friends.  While I was on that trip, the chaos of my ordinary life with two small children calmed down enough that I noticed that my wrist was hurting.  It hurt so badly that I couldn't hold up my book to read on the airplane or grasp my backpack.  I had no idea what was going on and just brushed it off and hoped it would pass.

It didn't.  When I got home, we all started to get sick.  Strep throat, influenza, RSV, and more strep throat made for an intense few months that wore my body down and the joint pain started to spread.  I had difficulty walking and picking up my children.  I mentioned it to a few doctors but they assured me it likely was a virus, something that would pass. 

So, I did what I do best... I put my head down and got through.  Everything started to get hard: car seat buckles, changing diapers, lifting, carrying, walking.  Somehow we got through each day, thinking that it had to get better soon.

It got worse.  Many days, I crawled up the stairs to get my children after their naps, then wept with them because it was so difficult to get them out of their cribs.  Handling a knife to chop vegetables was impossible, and I had to call my husband from the car to come and support me as I walked back to the house.  I finally had an appointment with a specialist who told me I did indeed have inflammatory arthritis.  The medications available were scary, but I tried them.  They kind of worked.  

Then, I got the shock of my life and discovered I was pregnant.  (It was not what I would have chosen at the time with my limited understanding but of course God knew we needed you, Thea.)  That was such an uncertain time.  I had to switch to a different medication which didn't seem to work.  My body was tired and worn down.  We had constant questions about how I was going get through a pregnancy and delivery and afterward, how we were going to manage three young children.

After Thea was born, I lived day to day, often hour to hour.  Finally, when she was three months old, I simply crashed.  My medically weakened immune system couldn't fight off a sinus infection that spread into my eye.  I spent a few days in the hospital getting things under control.

After that, slowly, things started to improve.  I started a different medication and it helped.  I could make it through to the early afternoons before tapping out.  We figured out some structures and routines that worked for our family.  I was learning to accept limitations and lean on my community.  It wasn't easy, but it was getting better.

And, since then, there have been ups and downs but generally the trend has been up, for which I am grateful.  My doctor helps with figuring out different medications to try and she really cares.  I generally know what to watch for and how to help my body along.  Most days, I am able to accept the fact that arthritis will be with me for the rest of my life.

See, now I feel like I've been talking about this for much too long and no one could possibly be interested in all that.  So, if you're still reading, here's the good part: what I've learned.

Early on in this journey, when doctors weren't sure what was going on and the pain was intense, I would lie in bed and was certain I was dying.  (I know, that sounds overly dramatic, but I was worn down and in a bad place.)  I had to wrap my mind around the fact that I was not getting well and that my body was failing me.  The concept and practice of memento mori, remember you must die, was particularly close to me during that time, and I found an unexpected peace with my mortality and human limitations that remains with me to this day.

I am a person who loves to be busy, working and doing.  I find joy in household tasks and projects, gardening, and my work as a teacher.  During those difficult years, all of that was taken away from me and I had to reckon with the fact that my identity is not found in my capability or productivity.  I was forced to ask for help, to admit weakness, and to become an unreliable person, all of which chafed terribly.  But, in the end, I developed a compassion and empathy that I did not have before, finally understanding that sometimes, no matter how you set your mind to it, you cannot overcome something difficult; you must pick it up and carry it with you.

One of the difficulties particular to arthritis and many other autoimmune diseases is that they are completely invisible to most people, which is compounded by the fact that there are good days and bad days. So many times, when I was in a time of deep despair and pain, just pushing though, people would say to me, "But you look so healthy!"  And, it's not their fault, because I did.  Or, others would see me pushing a child on a swing, and say, "You must be feeling better!" having no idea I was gritting my teeth with each impact.  So, I learned to be gracious, and to understand that our assumptions about others are just that - assumptions, and we can't really know their lived experience.

One of the most important things I learned is the necessity of grief.  I had to walk a slow journey of grief for everything I had lost, both in the present and in hopes for the future.  At first, I tried to be positive 100% of the time, and that simply does not work.  I needed to face the reality of my situation and allow myself to feel sadness, bitterness, and confusion, and once those waves passed, to walk forward again.

And, finally, I learned of the power of laughter.  In a dark moment, laughter immediately brings the light.  Being able to laugh at the indignities and limitations forced upon me chases away fear and uncertainty and brings a moment of shared humanity and connection.  As far as coping mechanisms go, I think it's the best one.