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 percent 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.
The Diagnosis
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.
Role Shifting
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.
Happy Father's Day ! Let me be the first to commend you for sharing your most inner thoughts and feelings about RA. I , a fellow arthritis survivor certainly know the trails and tribulations associated with auto immune arthritis. As you , I often read stories from women but few from men. Thank you for sharing and have a blessed day with your children . They are lucky to have a Dad like you .