Three key strategies to help you and your partner better manage life with a chronic condition
Let’s set the scene to a hot and humid spring day in Gambier, Ohio (about one hour Northeast of Columbus), where it was an unfamiliar 30 degrees celsius and I had just flown in from Vancouver, Canada, to attend my girlfriend’s university graduation ceremony. Her and I met three years prior while both of us were attending Kenyon College. Coming back to my alma mater after graduating just the year before felt familiar in so many ways. However, this time something was different; I came back with an abundance of swollen joints and a pain level that was much higher than I was used to. In the spirit of supporting my girlfriend’s big moment, I sat outside in my suit for three hours in the 70% humidity patiently waiting to watch her walk across the stage, knowing that the pain level was getting higher and the swelling was getting worse. Rather than getting out of the sun, taking some more meds, and icing my joints - which is what I would’ve normally done - I went around with my girlfriend and her family saying goodbye to friends and professors, going to dinner in an extremely enclosed space, and staying up long after what my body was able to withstand. That night resulted in one of the biggest flares I’d ever had. My joints completely shut down. I was unable to put any weight on my feet and any kind of movement sent excruciating pain up and down my body. The last thing I remember from that night was taking some emergency medication and my girlfriend and her brother carrying me to a bed to sleep it off. Aside from the pain and hurt, I had never felt so ashamed and embarrassed to take away the spotlight from the person I cared about most.
My name is Sadiq Jiwa and I was diagnosed with Juvenile Idiopathic Arthritis (JIA) when I was six years old. I’m writing this piece now as a professional golfer 20 years after my diagnosis, seeing the evolution of my condition from isolated joint swelling to systemic joint deterioration, muscles tightness & weakness, and chronic pain. But rather than discuss the struggles I had growing up with JIA, I want to talk about what it felt like to be in a relationship as a young adult while having a chronic disease. My past relationship lasted just under three years and even though long-distance and career paths drove us in different directions, I can say that I still came out with one of my best friends. In an interview with her about our relationship and managing my JIA, she helped me identify three key points to helping you and your partner grow together while living with a chronic condition.
Communicate the little things:
Yes, it might be a little cliché to say that communication is key in a relationship. But when it comes to disclosing the methods in which you manage your condition, communication is even more critical. Everyone handles their disease differently. For example, some people like having others around as distractions, while others like being left alone, both of which are perfectly fine. What I learnt was not acceptable with my past partner was not telling her HOW I wanted to deal with a flare or a bad pain day. Instead of communicating to her that I wanted to be left alone, I simply kept to myself until I felt better, excluding her from my process all together. Not telling her about even the smaller effects I had from my condition or from my medication, whether I thought they were necessary or not made her feel disconnected. Whether it was one of my medications making me vomit, or not being able to get through a workout because my pain level was a little higher, the less I told her, the more she had to guess how I was feeling at the end of each day. She said that no matter how minor something was, she still wanted to know.
Include them as part of your team:
I like to make the analogy of managing my arthritis as if I was the mayor of a village. My village consists of an extraordinary team of people both on the physical and emotional side of treating my arthritis including my rheumatologist, physiotherapist, coaches, etc. You receive information, prognoses, and treatment plans from every individual on your team, but at the end of the day, only you truly know how you’re feeling and what is or isn’t working. But what happens when you’re sharing all of that with your significant other? I spent the greater part of my last relationship keeping my partner out of all the conversations with my team members. It’s not that I wouldn’t tell her the outcomes, but she would only get my versions of these conversations. In her interview, my last partner told me she had never felt reassured about how I was doing until the first time she came with me to my physiotherapy appointment. Not only was my partner more connected to me after that appointment, but she felt like she had a little more knowledge on how to help me in the future. But most importantly, for our relationship, we added another layer of trust in each other by letting her become a part of my team.
Share the good and the bad:
One of the things I’ve learned over the 20 years of dealing with JIA is that there’s never just one issue or one part of the body that acts up; it always seems like there’s something new happening on a daily/weekly basis. One day some of my joints would be more swollen and the next day the swelling would be reduced, but I’d be nauseous from my medication; sometimes it felt like if it wasn't one thing, it was another. As humans, we have a propensity to attend to, learn from, and dwell on negative information vs positive information: negativity bias. When we’re constantly dealing with the struggles of a chronic illness, we don’t always realize both the negative feedback that has psychologically on the rest of our lives and the negativity it can create within a relationship. In my previous relationship, I tended to talk only about the negative aspects of my disease such as the symptoms I was having or the side effects I was feeling. And I only brought those issues up when I felt like I needed her help because I didn’t want to feel like a burden on her. I hardly ever stopped to not only think about and share the good things, but also think about how she felt when I shared those good things. In my interview with my past partner, she mentioned that she would feel so much better about our relationship whenever I shared something positive about my disease because it made her feel a part of the “team” and we did something together.
Even though there are many more things we can talk about when it comes to growing together in a relationship with a chronic illness, these three points stood as either keystone to the development of my previous relationship or an important missing link. I am confident that as the treatments for rheumatic diseases like Juvenile Arthritis continue to change, so will our approaches to managing these conditions become more effective both individually and with our significant others.
References:
American Psychological Association. (2013, August 1). Coping with a diagnosis of chronic illness. https://www.apa.org/topics/chronic-illness/coping-diagnosis
Australian Institute of Professional Counsellors. (2010, October 13). 7 Common Relationship Challenges. https://www.aipc.net.au/articles/7-common-relationship-challenges/
Vaish, A., Grossmann, T., & Woodward, A. (2008). Not all emotions are created equal: the negativity bias in social-emotional development. Psychological bulletin, 134(3), 383–403. https://doi.org/10.1037/0033-2909.134.3.383