Earlier today, a good friend asked for a “pick-me-up”. I turned to today’s date in Revelations: Latin American Wisdom for Every Day, a daily photography and quotation book that I keep in my office. I really enjoyed what I found and, so I thought I would share it here on my blog.
A festive crowd at carnival in Salvador da Bahia, Brazil.
A passing sound.
The fleeting sound of a profound miracle.
I am, of course, more than the mysterious flesh
in which someone once bought me into the world.
-David Escobar Galindo
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
A few months ago, Rheumatoid Arthritis Guy was thrilled when the National Rheumatoid Arthritis Society in the United Kingdom asked him if he would write an article for their upcoming magazine. Those of you who are NRAS members have more than likely already received your magazine in the mail…I mean, post. For the rest of us, I have included below the article that appears in the latest NRAS magazine. Hope you enjoy!
Living with rheumatoid arthritis can, at times, be a lonely experience. Though I continually try to share with those around me what I am going through, words alone will never be able to accurately describe the pain that this disease brings into my life. The erratic nature of this illness also makes it difficult for some people to understand the seriousness of my situation. If I put myself in their shoes, I can begin to see why. After all, if someone sees me walking around with relative ease during the afternoon, it might be easy to dismiss the challenges that I encountered earlier that day, when I was unable to get out of bed due to pain and stiffness in my joints.
Even though I use forearm crutches most of the time, the true extent of the damage that is taking place in my body is understood by only a handful of people: myself, my rheumatologist, my therapists, and those who are close to me in my life. While some of the joints in my hands and feet are beginning to show initial signs of joint damage, most aspects of my illness continue to remain invisible.
I have learned many important lessons in the years in which I have lived with rheumatoid arthritis, the most important of which has been to stay positive. For me, positive thinking combines hope for a better tomorrow with optimism that I will continue to make the most out of my life, tempered by the reality of what it means to live with a chronic and disabling disease. There are many moments when it seems like rheumatoid arthritis is working against my entire body. During these rough times, it is reassuring to find comfort in the knowledge that I can maintain control of my thoughts, and that I can use this positive thinking to carry me forward.
I have also learned the importance of connecting with other people who live with rheumatoid arthritis. For many years, the inherent loneliness of living with my illness was amplified by the fact that I did not know anyone else who lived with rheumatoid arthritis. During those flares when my rheumatoid arthritis was out of control, it was all too easy to think that I was the only person in the world who was dealing with this challenge. I now know otherwise. During the past year, I have met hundreds of other people who live with rheumatoid arthritis. We have communicated through websites, blogs, discussion boards, and support forums. I have been touched by each and every story that has been shared, and I am happy to know that I am no longer alone in my struggle.
I still felt like something was missing, though. You see, on top of living with rheumatoid arthritis, I am also a man. While there was a lot of personal and medical information that was available, I still struggled to find a male perspective of what it is like to live with rheumatoid arthritis. Combine this with the fact that many articles, studies, and reports are targeted towards women (who comprise a majority of the rheumatoid arthritis population), and it should come as no surprise that some of my feelings of isolation started to return.
Whether we like it or not, notions of physical strength and masculinity often go hand-in-hand. For me, this raises the obvious question: What does it mean to be a man who lives with rheumatoid arthritis? At times, I am unable to cut my own food or comfortably lift a glass of water. At times, I am unable to carry a bag of grocery items. At times, I am no longer the go-to person when it comes to moving a piece of furniture or carrying a heavy box into the other room.
On top of this, I am in my 30’s – which many people think should be the prime of my physical life. What does it mean to be a disabled man in my mid-30’s, who has to use crutches in order to walk around? Well, for many people this means that I must have injured my ankle while playing soccer over the weekend. Even in illness, I continue to have societal expectations of what it means to be a man placed on me. Most of the time I found myself going along with this role-playing instead of explaining that I do indeed live with rheumatoid arthritis, but I think that I am going to start changing my response. Next time I am asked what sport I was playing when I injured myself, I just might answer: I got into a cage match with my immune system, and my immune system seems to have won!
When I ask myself what it means to be a man who lives with rheumatoid arthritis, redefining what “strength” means allows me to get closer to the answer that I am searching for. Some days, being strong means powering through yoga class at the gym. Other days, being strong means taking care of myself by not forcing myself to do any physical activity beyond walking around my house. Being strong means asking for help, whenever I need it. Sometimes, I need physical support: assistance getting out of the bathtub, or a helping hand when putting on my sweater. Sometimes, I need emotional support: encouragement to smile during a particularly bad moment, or being able to release the wide range of emotions that I encounter on a daily basis. (Anyone who says that men don’t cry has either never met me, or has never lived with rheumatoid arthritis!)
The last part of trying to figure out what it means to be a man who lives with rheumatoid arthritis is, simultaneously, one of the most difficult things to do and one of the easiest things to do. For me, it comes down to not being bothered by the looks that I often receive. There is the look of surprise, when someone walks up to the weight-training machine after me and sees how much (or how little, actually) weight I was lifting. There is the look of annoyance, when I ask to be pre-boarded at the airport and I am perceived as not wanting to wait my turn in line. There is the look of anger, when it is assumed that I am not contributing my fair share when it comes to lifting or carrying certain items. All of these looks, and many others, have one thing in common: they usually come from people who do not know that I live with rheumatoid arthritis. While they might think that I am weak, deep down inside I know that I am strong. This is what matters.
All of us who live with rheumatoid arthritis can work to change these attitudes and perceptions. If we continue to share our stories and talk about what it means to live with rheumatoid arthritis, awareness will continue to grow. If we continue to be open about the physical and emotional challenges that we face on a regular basis, then maybe – just maybe, others will start to see our ability to accept the limitations that rheumatoid arthritis brings into our lives as a sign of personal strength.
—Rheumatoid Arthritis Guy
National Rheumatoid Arthritis Society provides support and information for people with Rheumatoid Arthritis and Juvenile Idiopathic Arthritis, their families, friends and carers, and health professionals with an interest in Rheumatoid Arthritis.