Father’s Day is upon us once again and having four children ages 12-19 makes this day one of celebration. All four are successful in their own ways resulting in much pride and joy. But the past few years dealing with a chronic illness like rheumatoid arthritis brought about adjustments in our family and in my role as a father.
Approximately 70% of rheumatoid arthritis patients are women for reasons unknown. Take a gander around RA discussion boards, online communities, and blogs and this fact will be evident. But there are a fair number of men with RA and many of us are also fathers. This combination of fatherhood and RA brings with it a unique set of challenges.
Prior to being officially diagnosed with RA, I went through several years dealing with two ankle surgeries, joint pain and fatigue. Nobody, including family members, put the pieces together until my primary care doctor referred me to a rheumatologist. When the diagnosis of RA came, education about this auto-immune disease was necessary for everyone. The broad use of the term arthritis is unfortunate for RA sufferers as many, including my children, believe that it is something only old people get. Children in particular harbor simplistic views about the world. This is exaggerated when they have less familiarity with chronic illnesses. It took many months for me to explain and demonstrate that there is a difference between osteoarthritis and rheumatoid arthritis. They experienced me dealing with RA symptoms over time which reinforced in their minds that this was a serious condition and was not going away. Watching me inject expensive, biological medications that are shipped to our home once a month on ice always results in wide eyes and curiosity. It’s less of a battle these days getting my children to help with tasks that I simply cannot do anymore – such as mowing the grass (I’m still working on getting them to run the leaf blower!). This education is an ongoing process as just the other day one my children made a comment about me being an “old man with arthritis.”
Rheumatoid arthritis makes one slow down resulting in considerable changes to levels of involvement in all areas of life. It’s not uncommon to have zero energy by early evening. I feel like a guilty blob at times when I can’t help with evening activities. Taking naps is a way of life now and my children know what’s going on when I disappear upstairs for an hour or so during the day. Sometimes the fatigue takes a toll on my ability to pay attention to things and I have to force myself to focus. In spite of these roadblocks, I love my children and want to do everything possible to be there for them. Pushing through the RA symptoms requires determination.
Engaging with my children in physical activities was always a source of simple pleasure and bonding. From wrestling on the floor, to banging it out in street roller hockey, to coaching little league baseball, to teaching them to snow ski or snowboard, I’ve always been involved. In addition to developmental changes in my children as they grow up, my involvement also changed as a result of the RA. No longer can I get in and “get dirty” as I used to. In the past couple of years, snow ski trips were altered or even eliminated due to RA symptoms. I foresee the days when I become the driver and ski lodge cocoa drinker while my children cut new paths in fresh powder.
I’m the primary breadwinner in our family. My wife and I planned for this many years ago so she could stay at home with our children when they were young. In this context, rheumatoid arthritis brought added pressure and questions like “What would happen if I become disabled?” and “Can I keep up with the pace of work?” I know that my wife thinks about these issues from time to time. Our former neighbor years ago had severe RA before the implementation of disease modifying drugs. No longer being able to work, he took disability and we saw firsthand the impact it had on him and his family. We are thankful that both of us are blessed with a fine education, jobs, and benefits. Thus far I’ve been able to remain actively employed. We’ve learned that to concentrate on questions about the future is counterproductive and that life must be approached one day at a time. We’ve made it thus far and have every reason to believe this will be the case in the future.
Rheumatoid arthritis combined with fatherhood presents a unique set of challenges. It requires adjustments in activities and perspectives about life. I’ve come to accept this as part of the journey. Come what may, I still love my children more than anything else and am so thankful for their love in return.
Photo credit: http://www.flickr.com/photos/62337512@N00/
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