Spondyloarthritis, My Support Systems, and Me

When I was nine years old, I went to the doctor for a mysteriously swollen knee, one that I couldn’t remember hitting on anything and that wasn’t going back to its regular size. Some time later, after a flurry of hospital visits and tests, I was diagnosed with spondyloarthritis. My life didn’t change entirely – I still took piano lessons, went to school, played outside with my siblings and friends, joined the softball team, and read way too long into the night – but from that point on, my life became colored by my disease. I had to leave school to go to the hospital for regular appointments; I had to keep up with my physical therapy; I had to remember to take my medicines and deal with regular blood drawing; I was painfully conscious of my horrendously swollen knee. Even now, I wince when looking at photos from that time and feel a measure of pity for my younger self.

I’m now 28 years old, and I’ve been living with spondyloarthritis for almost two decades. A lot has changed. My disease has progressed to my other knee, sacroiliac joints, and back. I’ve learned to manage it pretty well, and it’s not something I think about on a daily basis, or something I like to think has had a huge impact on my life. I don’t want to dwell on something so negative. But when I pause to look back and reflect, I find that not everything about my experience has been negative. There have been some silver linings. For instance, I believe that without my disease, some relationships I’ve built, especially with my family, would not be as strong as they are.

Before my diagnosis, my relationship with my mom was good, but not exceptionally strong. I was the oldest child, her support in dealing with my younger siblings. But after my diagnosis, I feel like my spondyloarthritis brought my mom and I closer than almost anything else in my life. For years, until I learned to drive, Mom was the one who took me to appointments, sat with me in doctor’s offices for hours, held my hand as I was poked and prodded with needles, read and talked to me about everything she had read in health magazines (we often laughed when she would start a conversation with, “I read in an article…”). A lot of memories with my mom consist of driving to the hospital, getting meals together on the way or in the hospital, and figuring out together how to live with this disease. I have vivid memories of her reading books, reminding me to take my medicine even when I cried about it, exercising with me and helping me when I got stuck on the floor because my back was so stiff that I couldn’t stand up. When I was in too much pain, she would rub my back to help me sleep. She did everything she could for me, and I’m so grateful to her. Things would have been a lot scarier without her, and I wonder, if we didn’t have this experience to bind us together, would these moments have been replaced with others? Or would their spots be empty, missing something big and important? I can only wonder and be grateful for the memories and time we do share.

I’m not the first person in my family to have been diagnosed with spondyloarthritis. My mom’s dad, Granddad, was also diagnosed with the disease, but at a much older age than me. His spine has been fused the whole time I’ve known him, but I’m not sure I noticed it much when I was younger – it was just part of Granddad. When I received my own diagnosis, we realized that we were genetically linked in this way. I think this is one of the things that gives me some measure of strength and relief when dealing with my disease. I’ve always adored my granddad and always felt like we were birds of a feather – we both love reading, writing, and hiking; we’re both introverts; we could spend hours together at the pool or walking or telling stories to one another. Now, this is a new thread that connects me to him, another way in which we are alike. And he has always been so strong and steady in dealing with his own disease. He exercises and eats well, and despite his fused spine, he does so much. He’s my inspiration, my goal, and, on the bad days, my hope that I can still live a full and wonderful and active life, even into old age. I’m sure that I would feel connected to him with or without this disease, but it almost feels like a secret we share, an experience that others might not understand no matter how much they love us.

While my husband only met me long after I’d developed spondyloarthritis, it’s still something that I brought into our relationship. I always joke with him that I’m a young person in an elderly body, and sometimes I laugh about it, and sometimes I want to cry. He’s always been supportive and understanding, reminding me to exercise, and cheering me on in my pursuit of physical health. He worries about me on days when I limp and sends me off to take a hot bath or use the heating pad when I’m in pain but being stubborn. I’ve heard my mom talk to him a little bit about taking care of me, and maybe that’s a connection that they share now due to my spondyloarthritis. Despite his care and love for me, I sometimes wonder how our relationship might be affected as my body continues to deteriorate. I wonder if he would still love me even if my eyes got worse, or I got psoriasis in my nails, or I had trouble walking, or my spine became fused. There are times when I worry about being a burden – they are few and far between, but persistent, a nagging pain that just won’t disappear. There are days when I’m grumpy because of the pain, or angry because of the fear I carry with me, and my husband is the one who has to deal with these emotions. On those days he listens, and gently reminds me what’s important, and we work through it together. We have learned more and more about being a team, and about dealing with these small frustrations. Without a doubt, we’ve become stronger because of it.

Other relationships have been affected in small yet meaningful ways. My maternal grandmother, Nana, is such a big caregiver, and I could always tell how much she took care of my granddad and how much she admired his efforts to take care of himself. I remember her telling me proudly how, when my granddad’s spine was beginning to fuse, he worked so hard to sit as upright as possible so that his spine fused perfectly straight, not a hunch to be found. In our conversations, she often asks me if I’m taking care of myself, if I’m exercising properly, if I’m eating right, and I can feel just how much she cares about me in those moments. Meanwhile, although I mostly bonded with my dad in areas other than my arthritis, I clearly remember him taking me to get blood drawn, and him having to fish me out from behind a chair and hold me down while they stuck the needle in my arm. Later, when I had to give myself Enbrel or Humira shots, and was still too scared to do it myself, he would help me, and I knew that I could always rely on him when I was frightened. As far as my siblings go, I’m not sure it really affected our relationships much at all, except for the fact that I’m grateful that I was the one who got spondyloarthritis and not them. It makes me feel like a better big sister to think that way.

My disease has also changed my relationship with myself and my own body – mostly in negative ways. At times, I’ve hated how it feels like my body just can’t get with the program, that it’s attacking itself and won’t give me a break. I hate that sometimes I can’t simply will myself to keep exercising, to keep eating right, to keep striving and working even as my body betrays me. I even carry fear about how this will affect my future self and relationships. I worry about pregnancy complications. I worry about passing the disease on to my children. I worry about raising children when I have such unreliable joints.

But then, in the times when I try to imagine what life would be without my arthritis, I feel a strange emptiness. What would it feel like to sleep through the night without painful hips or knees or a painful back? What would it be like to not have to constantly think about exercising or eating healthy just to keep the pain and inflammation away? At this point, after living for almost twenty years with this disease, I feel like a piece of me would be missing. Has this disease really become part of my identity? Has it shaped me so much that I truly can’t imagine life without it? Through my experiences with this disease, I’ve gained courage, connections, and compassion for those who also have to deal with chronic pain. For better or worse, it’s part of me, a part that’s never going away. But then I think of my mom and granddad and husband, my nana and dad and brother and sister, those who always support me or listen to me or understand me – when I think of them and their support, I know that, somehow, I can live with it.