People often ask me how I am feeling. I usually laugh a little, and with a confident smile on my face I say,"Today I am feeling about 92 years old." They laugh along and we go on our way. Today I was thinking that as hard as it is for those of us who suffer from RA, I must be hard for the people around us as well. Especially those who love us the most because they honestly don't know or can't understand how we are feeling.
Today I put myself in my husbands shoes. Not literally of course, but I was just thinking what it must be like for him having a wife with RA.
For a long time he went on with a pretty average, normal life. He went to school or work, His wife stayed home with Muffin. She cleaned, did laundry, went grocery shopping, washed the car, etc. Things were going pretty okay. Then one morning his wife wakes up and can hardly move. He doesn't know what to do to make it better. He doesn't know what's going on. He is scared, but he is the man of this family. So, he hides it and does the best he can to make her comfortable until he can get her to a doctor. The day comes and the Doctor says,"Your thoughts were right, it's Rheumatoid Arthritis." So what comes next?, he thinks to himself. What will this mean? How can we fix this? Doc puts her on Meds that make her sick. She gains weight. She looks pale. Her skin is covered in rashes. She is tired, and angry. She cries at night. She cries all the time. She mourns for her old life. He watches all of this. All the while trying to be patient, but inside he is angry too. He didn't sign up for this. This was not in the plan.
For those of us with this disease, it is easy for us to understand. We get each other don't we? But for those around us it is not so easy. It is important that we imagine ourselves in the shoes of our spouse. They are not always sympathetic. They can sometimes be insensitive or say things they shouldn't, but we need to understand that in most cases they are trying their best. They didn't sign up for this either, and other than the physical pain we have, they are suffering right along with us. It is always good to remember to have compassion for those around us. Here are some ways that can help if your spouse or loved ones are having trouble coping with your disease:
Hey, we all kind of have a picture in our minds of what our life will be like. Most of us have a plan for our lives. Places we will go on vacation, where we will live, what career path we will take etc. When you throw RA in the mix, a lot of those plans have to be altered to fit your new lifestyle. Usually that means it will effect those close to you as well. Give yourself and spouse time to mourn and be sad. It's okay to have those feelings. You have a choice when you are married to let something like this come between you or make your marriage stronger. Communicate with your spouse and let them know they can talk to you as well.
Don't Take it Personal
If your spouse complains to you about your disease..."You're so tired all the time." "I just wish you weren't in pain." "You never want to go out." ... Don't take it personal. This is their way of venting. More times than not this is actually a good sign that they are willing to communicate how they are feeling. There is no reason to get defensive over something you have no control over. Just be polite and listen then validate their feelings. "I know. I wish I felt better too."
If you feel bad, good, happy, sad, angry etc. be honest about how you are feeling. It doesn't do any good to leave others in the dark. You don't have to go around pretending you're fine because chances are one day you're going to snap. It's really not fun for your spouse to figure out why your freaking out all of a sudden.
Your spouse has no idea what RA feels like. It's hard to have sympathy or want to help when they have no way of understanding your pain. Explain to them in detail what it feels like.I usually like to add a little humor to lighten the mood a little. On bad days for example you could say something like," I feel like someone stuffed toilet paper in all my joints." I use that one when I feel a lot of swelling. Or you could say," I feel like My bones are on fire." Come up with your own stuff, but it is helpful to try and explain it in a way they can understand. Taking them to your doctors appointments is helpful as well.
Make the Best of it
Be there for them in ways that you can. You may not be able to make a nice meal all the time or do a lot of the things you used to. You can be a good listener though. You can help make decisions. You can do other things to show that you are still here and you care. Stay positive. Smile once in a while. When you're feeling good, be a joy to be around. Nobody likes a grumpy pants.
These are just some ways that can help. I am not a relationship expert or anything, but these are just some things I've learned along the way. Hope it can help! Good luck!