Supporting a Partner with AxSpA, Vol. 1: The Diagnosis Process
Living with axial spondyloarthritis is not easy, and I know it would be all that much more difficult without a support system. I also realize that while I experience all the physical symptoms of AxSpA (more specifically AS), I’m not the only one this disease is affecting. So, I decided to ask my spouse, Stacia, some questions about her experience throughout my diagnosis process. Here’s what she said.
When did you know there was more going on with Jessica than simple aches and pains?
I realized there was more going on with my partner, Jessica, than simple aches in pains in the summer/fall of 2013, four years into our relationship. For the previous four years, I had been aware that Jessica lived with daily aches and pains, some days much worse than others. Jess had informed me that she had an all too familiar ongoing relationship with doctors who repeatedly informed her she had back pain from bad posture and the solution was to do physical therapy, receive adjustments at a chiropractor, work on standing straighter, and take Tylenol and ibuprofen as needed.
In the early years of our relationship aches and pains came and went, with some days consisting of intense back pain. Often we were able to remain active and do the things we enjoyed doing like backyard picnics without supportive seating (something that would now cause her intense back pain and may lead to days-long discomfort and fatigue), long road trips, hiking, dancing, and busy weekends with little sleep - all activities that shifted from mild discomfort to intensifying discomfort in the summer/fall of 2013.
In the summer/fall of 2013, we relocated to Texas where Jess began working on graduate coursework. In her first year of graduate school was when I realized there was more going on with Jess’s symptoms. Mild back and feet discomfort led to intense back and feet pain and a couple new variables - hand pain and the inability to get a good night’s sleep. Jessica was 30 at the time, resilient, and it was hard for me to believe something like ankylosing spondylitis was the culprit of her ongoing, and intensifying discomfort.
I, like her, was confused and conflicted with emotion. I was relieved she finally had an answer; one that made sense, a doctor who told her it was more than poor posture. At the same time, I was terrified because I did not know what ankylosing spondylitis was, how would it affect her life, what her options were, or where this diagnosis revelation would lead her to as an individual or us as a couple.
I had never heard of ankylosing spondylitis before. I quickly understood there were medications that could help and that’s what I zeroed in on - the treatment options. However, it took me weeks and months to really understand what the diagnosis was, in other words, what the disease was doing to Jessica’s body and how it was and is possible that the disease could progress. I didn’t want to believe that things could get worse, or that medications wouldn’t quickly solve her pain and discomfort.
Therefore I found myself hesitant to immerse myself in Google searches on the topic, reluctant to continue reading articles that spoke of disease progression. Instead, I focused on what I understood to be the positives - medication, the possibility of remission, and the fact that they caught it when she was young as a way to convince myself it would be okay. In retrospect, I think I was stubborn and didn’t want to read about disease progression because I didn’t want to believe that would be Jessica’s experience, but also because it was out of my control--out of our control. I felt helpless in my inability to make things better for Jessica.
What did you learn from reflecting on this diagnosis experience?
Upon reflection, I wish I would have been more open to speaking to her about the negatives, worse case scenarios, how our life together may change, and how we would overcome it together regardless of how the disease may or may not progress and change throughout her life. Because of my own fears, and the fear I saw her battle in the months following her diagnosis, I went into a defensive, overly positive mode not wanting to converse about the bad. Instead, I overcompensating by reiterating the medication would bring good days, the doctors would identify the right medications, getting lots of rest was the answer, and downplaying and even refusing the recognize that her AS symptoms could get worse.
I realize now that this likely left Jessica feeling more alone in her new experience of being diagnosed and learning about the disease because I downplayed the negative and was reluctant to openly speak with her and encourage her to confide in me about her fears, anger, and sadness resulting from the diagnosis.
What I’ve learned, and what I wish I would have realized sooner, is the importance of speaking about the good and the bad. Of course, we want the good - to believe and hope that medication, a comfortable bed, and good shoes will help to alleviate discomfort and deter worsening symptoms. But, it’s meaningful, supportive, and just as helpful to ensure Jessica doesn’t feel alone, that she can confide in me and articulate her worries and that I ensure she knows I understand her worries and experience of changing and progressing symptoms from AS to be valid. In my experience, supporting a partner with AS requires optimism, but it should also come with the ability to ask, listen, and empathize with the reality that things could become worse.
Can you tell when a flare is coming?