RA from a Husband’s Perspective
I recently sat down with my husband (Richard Faust) to get his perspective on being married to a person with rheumatoid arthritis. He shared a lot of great insights about his experience in the following Q&A.
What did you think when you first saw me?
My first impression of you was when our apartment building elevator was broken and the firemen had to get you out. [We met while living in the same building.] When you came out, you were as pissed off as a wet hornet. You were cursing up a storm! About how our apartment building [was terrible], the management [was terrible], and the elevator situation was unacceptable. If I remember right, you were late from being stuck in the elevator so you didn’t stick around. You said your peace and took off.
I just remember being impressed by your feistiness.
What surprised you as you got to know me and rheumatoid arthritis?
Surprisingly enough, I don’t think I was surprised by your level of independence and autonomy. Partially because I’d seen you in action, taking care of yourself. But also I knew you lived here in DC and were somehow getting by.
For me one of the major surprises wasn’t so much you as learning about the disease. I had no idea RA was an autoimmune disease. On some level I knew there were kids that had some form of arthritis, but I didn’t know specifics and hadn’t heard of someone getting it when they were two. You name it about the disease and I didn’t know it. For example, I know someone with Lupus, but didn’t know they were related. I was unaware of all the things that come with the RA package, such as related symptoms and conditions. I was also very surprised to learn that while the disease is always with you, the day-to-day struggle is often more dealing with the people in society and not the disease.
What concerns did you have being married to a person with RA?
There were concerns about the effects of the disease. We were going to have to think about things that are concerns for all couples, but through a different prism. The biggest was the decision about children. Every couple has to think about that—what do they want, what they are looking for, how it would affect their lives. We had added questions about the disease, effects on you and child-bearing, on long-term care issues and raising a child.
I think one of the most interesting issues was how other people reacted and how they would try to give me advice or say things. Almost as if I hadn’t put any thought into what marriage would mean or what being married to someone with a disease would mean. I found this very interesting, as none of these people had their own experience with this kind of situation. People questioning me: “Do you know how hard this will be?” For the record, not that hard! People weren’t trying to be negative. They were talking about the future and the long-term considerations. My reply: “Of course there are real concerns, but nobody knows what’s coming. Anyone or couple can have hardships at any point.” Even if you know there will be difficult times, do you not be with the person that makes you happy? I think that’s a cowardly, hollow way to live life.
What things or situations frustrate you as my husband?
I get frustrated at seeing what you have to deal with on a societal and personal level day to day. Such as the street you can’t cross because the construction people made it impassable for you (and your wheelchair). Or the train that you can’t get on. Or the people that won’t let you on the elevator. The fact that you have to go on television to make the case that your commute shouldn’t be that tough. And then people praise you and say how great that you did that and how strong you are—but did they do anything to make things change? I get frustrated because being kind and doing the right thing isn’t usually that hard—it’s usually very simple.
What advice or encouragement would you give to other spouses/partners of individuals with RA?
My first piece of advice would be: Don’t treat your life and marriage as though it’s very different. If you can’t get the everyday things that go into the marriage right, it doesn’t make a difference how you deal with the RA. Dealing with the disease doesn’t make you a good spouse. Doing the things that make a good spouse, make a good spouse. Dealing with the RA is just a part of what you do.
Have a sense of humor. There are things both of you are going to have to laugh at! Whether it’s stupid people or just the unpredictability of the disease, or even the predictability of it.
Never forget why you are with this person. They are not the disease. It is part of our lives that we have to deal with, but it’s not who we are.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?