How to Live With a Loved One With Psoriatic Arthritis: Advice From the Other Side
I sat down with my hubby for a candid conversation about any advice he might have for others who are the support system for a loved one with psoriatic arthritis. Being the support for someone with psoriatic arthritis is not an easy role at all and all too often we are focused on our own pain and forget about how PsA also affects those who love us the most. Many times, our loved ones know us better than we know ourselves. They have their own burden to bare watching us struggle with the many aches and pains, all the while often feeling helpless as they watch us battle our own bodies. Usually a man of few words, he had quite a great deal to say on the topic.
Do you have any tips or advice for those living with someone newly diagnosed with PsA?
“Don’t just think they are whining. I guess I’m not the most compassionate person out there. I guess my initial reaction is just suck it up and move on. But there are just some things that can’t be done that way. I guess I’ve realized in my own head because of what I try to do. I try to fix everything. If something is broken, I try to fix it. But with PsA, you can’t fix it. So I have to tell myself that the first thing that pops in my head usually isn’t correct. I can’t fix it. Instead of fixing everything you just have to try and work through with what the day has presented itself with. If it is a really bad day, try to cover things as best you can to keep them comfortable and like they are still involved and a part everything.
Even though the easiest solution seems to be to just tell them to sit on the couch and move on with your own day, but you don’t want to separate them from what is going on. I don’t think that babying them is a good idea, when they aren’t feeling well, but neither is telling them to suck it up…I try and balance compassion with making sure they (she) takes good care of herself. There are some days when I know she is going to need more understanding and compassion than others. Enjoy the times when they (she) feels more like herself than not.”
Do you think having a parent with psoriatic arthritis affects your children? If so, how?
“It certainly affects the kids. But I don’t think it is necessarily a negative thing. I don’t think that the kids care that she isn’t a parent out there running behind them in a jogger. She doesn’t have to do that for kids to still have a good relationship with her. There are so many thing she can do with the kids that aren’t stressful on her body.
Sometimes, the favorite part of the kids’ day is sitting together on the couch, or reading a book together. Sometimes, I think because of social media, we associate our kids’ happiness with the places we take them or the things that we do instead of the time we spend with them. I know it is hard, especially with the little one wanting to be pushed on the swings or things like that, but I don’t think that it is a bad thing that there are just some things she can’t do.
I think when our kids get older, they will remember always being in a loving home, and doing the best we could given any of the constraints- money, physical, or time. I think when they are older they will always remember you being there for them and giving them all you have, no matter what amount that it.
I think she does a hell of a good job giving whatever she has ‘in the tank’ for that day, whether the tank is ‘full’ that day or not. I don’t think she ever gives any less than what she has for the day. If anything, since being sick I think she gives more than what she has for the day because she never knows what she will have to give the next day.”
Do you have any other thoughts you would like to share with those who live with someone with PsA?
“Enjoy it. It is not going to change. That person will never be the person they were before. You have to find the positives in it. We have had to make changes in our future plans. Where we used to look at our future from a financial, employment means. Now we look at our future as the time we have together, and the time she has with the kids. Ask yourself what would happen if the roles were reversed. She wouldn’t look at me differently. It helps that we had a good thing going before. If you are in a good place in your relationship, it is easier to stay in that place. I’ve never looked at her differently, I’ve just looked at what she can do differently.
The hardest thing for me, and the hardest thing for me to do in life all the time, is just to be patient. Patience doesn’t always mean a time frame, it just means that I have to be patient both with myself and her. For days when I’m not as good as I should be, that is okay. Just like her, we are both working through it. It is easy to realize that I’m not doing what I should do, but it is very hard to flip that switch and do what I should do to help her during the day. I know at the end of the day, I will still be holding her hand, maybe just not as tightly as I used to. As long as that’s how I try to keep our life going, it will be alright. We will make it together.”
I can’t think of a better way to end the conversation if I do say so myself.