Even in the best of relationships, a diagnosis of a chronic illness such as rheumatoid arthritis (RA) disrupts everything. Your world comes undone. All time, energy, and thoughts become devoted to your illness. But what about your partner? What thoughts and feelings have they been experiencing?
Recently, I checked in with my husband of 29 years to get his thoughts on my 14 years with RA.
Cathy: Originally, I went to see our primary care physician because of stiff swollen fingers and knees, having no idea what was happening to my body. Before my diagnosis, were you familiar with autoimmune diseases such as RA?
Steve: Not really. I had seen commercials for arthritis, but I always thought it was just more of soreness people get as they grow older. And, I always thought there was medicine to treat it. I never realized there was more severe RA, which is more debilitating.
Cathy: It took months for me to get in with a rheumatologist and in those months my symptoms worsened quickly. I remember you waking up to find me standing in the kitchen crying in panic because I couldn’t get the lid off the canister to make coffee. In those early days, the struggle of walking down the stairs in the morning made me embarrassed, even in front of you. What were your original thoughts and fears when I was diagnosed with RA?
Steve: At first, I figured there was medicine to treat it, and it would be something that could be managed. But once you got much worse, my fear was that you would be permanently disabled. The worst fears were that you would be disabled to the point you could not function in a job or in our relationship.
Cathy: For a lot of years, there was good reason to worry about how much worse things could get. As a full-time homeschooling mother and adjunct faculty teaching part-time in the evenings, I had a lot on my plate while also trying to deal with my own fears and inabilities. In fact, there were times you drove me to work because the walk from the parking lot to the school was too much. What did you feel was your role in my illness and has it changed as I have gotten better?
Steve: I knew I needed to try to help sort through it and give you emotional support, and also to offset any work items that needed to be done that you could not do. As you have gotten better, you have been able to do more and take on all the things you were doing before. So, for me, it has made things much easier overall.
Cathy: I’ve had a lot of ups and downs on my RA journey. It was probably the one time in our marriage that we had to take different paths in dealing with something difficult. I needed to focus on myself and didn’t always have the energy to consider what you were experiencing. As you were helping me deal with my diagnosis, did you feel your needs were always cared for?
Steve: Not really. I think the illness takes over and changes a person’s life — much more than I would have ever expected. So I didn’t really see what was coming until you were getting to the point that you couldn’t really walk long distances. I think the illness dominated your time/thoughts and caused a lot of depression. This is understandable, and I would have probably responded the same way if it was me. But this changed our relationship quite a bit and the focus changed to more of a “survival” mode for you, as you worked through how to deal with things. A lot of the things we used to do, like go to the mall and walk around, etc., kind of stopped happening. I think the priorities for how we used our free time changed quite a bit. Also, in general, you were in pain and depressed a lot of the time. I would try to show support and not require as much focus on me.
Cathy: I think it is fair to say that my RA diagnosis has been our greatest challenge. In my effort to get better, I spent a lot of money we didn’t have on treatments — some that worked and many that didn’t. This also upset our family habits and, in a way, I became a different person. Looking back over the last 14 years, what did we do right and what could we have improved upon?
Steve: I probably should have taken it more seriously initially. I thought it was something that could be treated with medicine easily and would not be much of a problem. I didn’t really put a lot of effort into understanding the details. I think changing our food habits and really looking at organic, gluten-free, etc. was good and these changes have made the kids and me healthier, too. Looking back, I wish I would have made more of an effort to understand things better, and also look for treatment options. I think I kept hoping it would just get better.
Cathy: We have learned a lot over the years. Do you have any other thoughts you want to share?
Steve: In general, I think getting this level of RA is almost like a part of a person dying and it changes a family’s lifestyle, priorities, and focus. Since the illness comes up gradually, if you don’t learn about the seriousness of it right away, it can gradually create a “blind side.” I didn’t really understand how things would evolve until we were far into it.