Rheumatoid arthritis brings many challenges to our lives besides the obvious pain. It also brings the challenges we must face with our family. Sometimes family members don't truly understand what we are going through because they have never had that experience themselves. However, they do care for us and the challenge for us is to find and accept who they are and how they are able to handle our disease. For my family, it has been a growing time.
What I Have Learned I Need to Give My Family Now That I have Rheumatoid Arthritis:
- Knowledge: Sometimes I think we want to protect our children from the pain we experience, but without knowledge, they sometimes interrupt things incorrectly. My children have appreciated the knowledge of this disease from the beginning and the freedom to ask questions as needed with real answers.
- Ability to Help: Our children are very in tune with us and whether we tell them or not, they know we are experiencing pain. They want to take that pain away and they often feel helpless. Let them help. For my kids, it means helping me undress on days my shoulder is frozen, carrying groceries for me, opening jars and bottles, chopping food, etc.
- New Expectations of Mom: For me one of the hardest things to give up was running and playing physically with my kids. I felt I had lost a part of what I could give them. Over the years, I have discovered new experiences I can give them and it has been enjoyable. They need to see mom smiling and having fun with them and that means I have to challenge myself to find new things we enjoy together.
- Understanding: I think sometimes when we are in pain and struggling, it is difficult to see how our spouse may be feeling. My husband worries about me constantly and it hurts him deeply to see me in pain, but he also knows me well. He knows that I need independence and he has respected that by treating me pretty much the way he did before RA. He gives me the independence he knows I need, but is more than willing to help when asked. He struggles with crossing lines that make me feel I can't do anything and wanting to do it all. It isn't easy for them to see us in pain and like us, they experience many feelings.
- Time: When we are in pain, much of our time and energy is devoted to the pain whether we want it to or not. Just as we have to make changes in how we live our lives with RA, our spouses have to make those changes too. But, they still need time and attention in all of this. They need to feel they are still loved too.
- Ideas: My spouse needs definite things he can do to help me. I know we hate to have to make lists for others when we are flaring, but I have found it really saves feeling sorry for yourself later that help wasn't there and it lets our spouse know exactly what we are not capable of doing that day.
- Time Off from RA: Rheumatoid arthritis requires a big chunk of our time and energy. There are days I have personally decided to not even discuss RA. We all seem to need a break from it.
My Extended Family:
- Updates: Our family needs to know what is going on with us. My family lives 700 miles away so it is easy to not share things with them. But, they need and want to know.
- Healing Thoughts: On my worst days, I email my family and ask them to all send healing thoughts to me. At first, asking for this was hard for me, but what I discovered is my family wants to be able to send those thoughts to me. They want to help in whatever way they can and to be included in my healing efforts.
- Help: On one of my sister's visits, she ended up cooking and cleaning the whole time she was here. She even cleaned my refrigerator! It was really hard for me to let her help when in my mind I had planned on taking care of her during her vacation. After many conversations with her, I knew she needed to be able to help me. Our family can't take away the pain, but they can help relieve some of the responsibilities we have that add to the pain. Giving up control and letting others help can be so healing.
What I Have Loved Receiving From My Family Now That I have Rheumatoid Arthritis:
- Help: I can't even begin to tell you how helpful my children are to me. There have been times when flares have been so intense that I felt like the child and them my parents due to the responsibilities they have taken on. They help with everything - walking the dog, cleaning the house, cooking, grocery shopping, carrying laundry baskets, opening cans and bottles, opening doors, and much more.
- Support: My family was invited to attend my appointments with the naturopath. Together we learned about how diet, spirituality, relationships, and more play a part in our health. There were many times when I was first on the elimination diet that my then six year old daughter stood in front of the stove and demanded I not eat food I was restricted from. She wanted her momma better and was willing to do what she needed to do. (She now follows a gluten free diet also and her chronic eczema has healed itself. When she eats gluten, it returns.)
- Positive Attitudes: On my worst days, my kids come to me and have me think about happy thoughts. They make me laugh. My daughter once kept a chart on the refrigerator of faces. If I was having a bad day, I received a sad face, an okay day was in-between face, and a good day was a happy face. She came to me one day to report that I had five happy faces in a row. That was reason to celebrate.
- Protection: My son has always been my protector. Once he was old enough to stay at home alone, he still insisted on attending rheumatology appointments with me because he was afraid I might get bad news and he didn't want me to be there alone. I noticed over the years that he wouldn't let me grocery shop alone and that he was always one step ahead of me when we were in public. If we had a lunch bag, he was by my side immediately to pick it up. If something needed to be moved, he was there before I could even ask. He needed to help and this is how it worked for him. Now that I am feeling better, it has been nice to see him relax.
- Support: I have tried a lot of alternative methods to healing which have required out of pocket money. My husband has supported each and every thing I have tried and learned some things to incorporate into his life too. Recently I heard him telling some friends about how we eat and he seemed so proud. Knowing he is on my side has always been healing.
- Diet: My husband has been more than willing to reduce the amount of times we eat out at restaurants and to eat at restaurants that provide food selections I can eat.
- Normalcy: My husband continues to plan fun events for our family while knowing and accepting that we may not be able to complete the event as fully as we once did. He knows of my restrictions but also knows that it is important for me to still feel "normal" and to enjoy all that life has to offer.
- Love: One thing that has never changed in my seven years with rheumatoid arthritis is the love I see in my husband's face for me. There have been times I have feared he may get tired of me with RA, but so far, I haven't seen any hint of it. When he looks at me with that love, I feel normal and that is a wonderful feeling.
My Extended Family:
- Diet: Wow! I can't say enough about the support my extended family has given me about my diet restrictions. When we visit for extended periods, they provide all my food. They have researched gluten free diets and inspect all ingredients before feeding me. If we eat out, they are more than willing to eat someplace that works with my diet restrictions.
- Support: I imagine there have been many decisions I have made on my journey that my family has not agreed with. However, they keep those thoughts to themselves. They ask questions that make me think, but I always feel that they trust I am making the decisions that are right for me at the time.
- Space: I am a person that needs space. I don't like to be bombarded with questions but I do like to know that I am cared about and my disease is understood. My family provides both.
The greatest lesson I have learned in regards to my family is that rheumatoid arthritis is not an individual disease. It affects each person in the family in different ways. What takes time and needs care is to work together as a family to find what works best for your unique situation and family.
Published On: March 07, 2011