My Loved One Has Psoriatic Arthritis: Views From the Other Half
Sometimes, because we are the ones who live with psoriatic arthritis every day, we can easily and understandably get wrapped up in how it affects us, on a daily basis. But what about those that love us? How does our diagnosis of PsA affect their lives? If we are going to have successful, lasting relationships while living with PsA, I believe it is so very important to also understand how PsA can affect their life as well. So I sat down with my darling hubby, with a list of questions in hand, to really try and get a better idea about what is like to live with, well, me. I learned that my normally direct and to the point hubby has rather a lot to say on the topic.
What is the hardest part about being married to someone living with PsA?
“Watching my wife not be as happy with herself as she used to be. She sees herself much differently than I do because of the changes. The small stuff, like laundry and dishes, and sometimes hanging out at the house instead of going out, aren’t a big deal. But seeing how she beats herself up about those things is a big deal. She is significantly harder on herself about things that just aren’t important.
The only thing that matters is that her physical changes are something we can’t help, but her mental changes are things that we have control over. Sometimes it is harder for me to feel like I am doing enough to help her fix what we can, or control what we can, because we can’t control the physical part. I am not always a positive guy, and it is hard to appear upbeat even and let her know that I’m not upset that she can’t do those things.”
Have you noticed changes (good or bad) in your spouse since diagnosis?
“Yes, the good parts are that she has been more caring and compassionate towards others that are struggling as well. She understands what people are going through more than she did before. She has friends that she has reassured, and told them that they will be okay much more effectively than she would in the past. She has always been caring, but she is even more so now.
The worst part is that the lows are lower. Everyone has highs and lows in their life and their mood. But when she isn’t doing well, she REALLY isn’t doing well. Before, if she wasn’t doing well, she could just shrug it off but now when she isn’t doing well, you know it is bad.
When she gets pushed, and is “done” it is much clearer that she has had enough. Her emotional peaks and valleys are much more extreme than they used to be.
(‘Any changes from a physical perspective?’) "Well yeah, her body is falling apart.”
How has your relationship with a person living with PsA changed?
“Well, before she was always the positive one. She always kept me in check with disciplining the kids. I was the stern one, while she was the nurturing one. Now some days she doesn’t feel like being the happy, nurturing one. So now, so that we both aren’t negative, I need to check myself and be the happy, nurturing one, or else it turns into a disaster. I think I have to put more effort into it than I used to, because if I want a good day, it is up to me. She can’t help when she doesn’t feel well, and there isn’t anything I can do about it.
I haven’t ever been upset with her about it, but there are times when I am better about being compassionate than other days. Overall, it is more work, and harder than it was, to maintain the goodness of our relationship, that we used to have, than it once was. I don’t think it is a bad thing, but it is a definite change in our relationship. I think any marriage, any good marriage, over the course of time, takes changing and work. You are never going to stay the same person, so if you don’t work together, it is never going to work. This is just another evolution of our marriage.
The couples that make it are the couples that have worked together. I’ve never heard one old couple say, ‘Our entire marriage was great.’ I’ve heard, ‘When you have challenges, this is just what we have to do.’ (I also have about another year until I buy my Harley…).
Don't be afraid to ask questions
I know, living with me even when I was healthy wasn’t easy. But living with me, with PsA, is downright impossible. Our family and our loved ones are our support system, they are the glue that holds us together when PsA threatens to tear us apart joint by joint. Take the time to talk with those that love you, ask them these same questions that I asked my darling hubby. Open up the lines of communication and you just may find your loved ones understand more than you realize.
Do you regularly track your psoriatic arthritis symptoms?