Men Living with Rheumatoid Arthritis: Questions and Answers
As part of this month's All About Men theme on MyRACentral, I interviewed three of our users about living with RA from the male perspective. Brad, BerserkerRA and Mike were kind enough to share their story.
All three men are fairly recently diagnosed, but as many of us, had symptoms of RA for a long time before they received the diagnosis, including swelling and high pain levels:
How does RA affect your life?
BerserkerRA: This last year it has been pretty relentless and brutal. I went from being a fairly active guy with strength to spare, to pretty much sitting in a recliner. I've recently found that Remicade works for me, have started to increase my activity levels, and am really surprised at how much strength I've lost. All of my hobbies (except reading) have been brutally curtailed by the disease. I also have a hard time getting up from / down to floor level, so I haven't been much fun for my 6 year old to play with.
RA has helped me in some ways. I've had to learn to ask for and accept help from others - probably a lesson I wouldn't have learned otherwise.
Brad: I was a store manager and regional trainer for over 20 years for a major department store chain. My life was fast paced - working 70+ hrs a week not counting time on the phone from home, and spending many months a year on the road. I am now on long term disability and SSDI. My life has slowed to a crawl. It was a tough road to say the least for some time. As a hobby I have always been a woodworker. RA has taken some of this away from me as well. I have turned more to simple projects and I take my time. I guess the bottom line is RA does affect your life in a big way, but it is up to you to adjust to it and carry on.
Mike: not being able to do the things I use to do, working in the yard, trimming the trees and hedges? Those little things around the house that became so difficult.
Has RA changed the relationship between you and your spouse or family and friends?
BerserkerRA: Luckily, I'm blessed with a terrific wife and son, an awesome extended family and a great, super supportive bunch of friends. If anything, RA has brought me closer to all these people.
Brad: It has given me much more time with my wife, an unexpected bonus! We are closer than ever. I found out in a hurry who my True Friends were. When I had to stop working and was no longer available to go do things with friends at the drop of a hat most of my friends evaporated in a hurry. I have a few left, and I truly appreciate them! I have good days when I can go and do things, and I have days when I have to cancel plans. They understand and support me. I still have a few family members that just do not "get it" about RA. I would say my wife, mom, and stepfather were the ones who helped me to keep my sanity over the time it took to adjust to my "new" life.
Mike: RA is a very difficult disease to understand, it's hard to plan anything. My Mom had RA and I did not really know what she was going through, I did not understand why she could not do anything at times, because of the pain, but I do now. It is very hard for other people, friends, and family to understand how I could be good one minute and the next minute, the pain is so great you cannot even walk.
What's the hardest thing about being a man who has RA?
BerserkerRA: I was never taught that a man is supposed to be physically strong, but I always have been and I really miss that. I have to ask my wife to do things for me because I'm simply too weak or can't physically do whatever it is. Dealing with the emotional challenges of RA with grace has been an on-going struggle for me. It is difficult for me to face that I may one day not be able to contribute to the financial health of my family, and that my wife might have to take care of me.
For the most part I am able to ignore what others think, but there are certain activities that are I guess hardwired into my brain as "man tasks" that my wife does that still bug me. Things like mowing the lawn, taking out the garbage, etc. Silly, yeah? It also drives me nuts not to be able to open or hold the door for people.
Learning to listen to (instead of ignore) my body's limits has been tough.
Brad: Giving up the provider role. I had always strived to provide the best life I could for my family. I had a job with a lot of responsibility and power and seemingly overnight that was all taken away from me. My wife had taken over my old role and now it was up to me to adjust to it! I resented RA, I resented my doctors, I resented my whole life and fell into depression. My wife and family guided me through those dark days and now I just feel lucky to be surrounded by people that care so much for me.
It can be difficult to find support for men with RA as well. I realize it affects far more women than men, and any short stop at a support site will verify that! I belong to a few online support groups (MyRACentral was my first and I still enjoy it!) and have found the guys tend to congregate together. I have made many great new friends online this way.
Mike: Not be able to see my grand children as often, who live 2000 miles away. The hardest thing is accepting you have RA. Not being able to do those little things, not being able to be that man your wife came to depend on. The depression, feeling useless when you cannot do things you have to do, and can't. You ask yourself, why me.