Living With RA Makes Me Strong


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

NRASNational 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.

More Info: www.rheumatoid.org.uk.

19 Comments
19 comments
  1. Cathy says:

    That is beautiful. You are strong. We are all strong. Somedays I feel that strength just pouring out. This reminded me of that strength. Thanks.

  2. Lana says:

    This is so absolutely beautiful. You are right about society’s expectations and male strength. It is a cruel world we live in, but as I read that section of your article, I was reminded of a moment about 4 years ago when my ten year old was six and he got a fight with a bully and he came home and he told me that that the bully was bigger than him, and he wanted to cry, but he could because he was “big boy now” and “big boys didn’t cry.” At that moment, I realized, for probably the first time, that it takes more strength for a male, a child or an adult, to cry than it does to lift something heavy.

    As for your comment: “I got into a cage match with my immune system, and my immune system seems to have won!” I had my own similar one this morning. I am feeling all achy this morning and I was barely moving, someone at work noticed and asked if the baby kept me up all night and is that why I was feeling all exhasuted. My response, “I was in the Royal Rumble match last night. I was really there, not just watching it at home.” (http://www.examiner.com/x-25456-Detroit-Pro-Wrestling-Examiner~y2010m2d1-2010-WWE-Royal-Rumble-results-and-thoughts) Sometimes, humor is the remedy to living with this disease.

  3. Wullie says:

    wish my family would read this, i think they think because i lie down nearly every day for a nap, its because i want to and not because i have too. i don’t think they know what RA is and i don’t think they ever will!.

  4. Teresa says:

    Thank you RA guy. I woke up at 5 am ready to go, but not my body. I knew I had to do some reading and you would be my first stop. Thank you for writing about RA so that I and others feel connected and not alone.

  5. Sherri Taylor says:

    “HI FIVE…or in our case low five……It is amazing how you capture and express what living with RA on a daily basis is like for us.

  6. Jennifer says:

    RA Guy,
    You always amaze me with your brillant writing (and again made me cry). Whenever we get a new member to our support group I point them in the direction of your blog as you have a way with words. You ‘nail on the head’ what it is really like living with RA in words that I can not express – so thank you for doing that for me.

  7. GwennieUK says:

    I loved your article it brought a breath of fresh air to the magazine, I hope NRAS ask you to write a piece for every issue!
    I really related to your article, two sections in particular had a great impact on me and have pushed me forward on my own RA life path – thank you RA Guy you are a true superhero!

    ‘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 was so wrapped up in my anger I didn’t see I still had control of a very valuable part of my body.

    ‘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.’ – I totally agree, it my resolution for 2010.

  8. Valerie says:

    Thank you so much for such a beautiful and honest piece of writing. I can understand how it must be very lonely to be a man in his 30′s with a condition that is more female-oriented, but overall I get the feeling that you cope well.
    I am much older than you and was only diagnosed with RA a couple of years ago.
    Currently, my medication seems to be keeping the symptoms under control as I am painfree most days.
    Should my condition deteriorate, I hope that I may have your strength and positivity to deal with it.

  9. Jenni says:

    Lovely.

    I always say that sometimes we need to hit rock bottom before we realize how strong we are…And at that point it can only get better and we will only become stronger.

  10. Jan says:

    I’m glad you re-posted this. I have a 32-year old son and so I can slightly imagine how difficult it is for you being about the same age with RA. That’s why I liked reading a post your mother wrote sometime. (I am new to your blog–and to RA, so I sometimes look back.) Your honesty helps a lot of people. Thank you.

  11. Kathy says:

    Thank you for enlightening me that us women really don’t have it so bad. I am a 54 year old woman with RA so at least when I ask the grocery bagger to load my trunk for me, it’s not so bad. I can’t imagine the looks you get when you need help!
    I will add you to my daily prayers. God bless you for sharing with us all.
    Kathy

  12. Dannie says:

    Thanks RA Guy,
    As another reader said… you hit the nail on the head! I too hate the ‘looks’ I get from strangers when I ask for help. I am always asking shop assistants to carry heavy things out to my car, or the supermarket packer not to pack two cartons of milk in the same bag. I hate having to ask for help like that, I’m only 45… surely I can carry a few groceries!!!
    Thanks for sharing your superhero stories, I look forward to reading your posts. Dxx

  13. Thrive With RA™ says:

    Hi RA Guy, this was an enlightening article. Thank you for your raw and sincere emotion you shared. I’m glad that you were heard ’round the world.

    Being a mother of four sons and clearly the minority in my home, I’m quite cognizant of the male perspective. As a communications and PR professional,soon after my RA diagnosis I focused some advocacy on the male RA patient awareness during RA Month this past May by way of an article on my “Men & RA” page. I immediately noticed after diagnosis that women with RA were exclusively spotlighted almost everywhere, even logos defining advocacy and information on the disease. I felt that men must have a hard time identifying with a disease they have to live with whose “corporate identity” excludes; some could even be perceived as blatantly ostracizing men. I’m seeing some improvements already from the media for the male RA patient. I hope it escalates to where it needs to be for a more comprehensive outreach.

    Thank you for paving the way for more men with RA to feel empowered, despite society’s prejudices.

  14. Alanna McCarthy-Baum says:

    I always tell people when they ask why I am using a crutch, or my knees are wrapped, wrists are wrapped, compression gloves are on, parking in a handicapped spot. etc… I tell them I have Rheumatoid Arthritis and other conditions. I tell them that I am allergic to myself… LOL!

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