XY With RA

Today’s post is dedicated to all the men out there
who are living with rheumatoid arthritis.

Superman1

Rheumatoid Arthritis Guy has been wanting to write, for quite some time, about what it is like to be a guy living with RA. I originally thought that I might alienate some members of my predominately female audience if I spoke about this too early on, but now I know otherwise.

Many aspects of living with rheumatoid arthritis do transcend gender differences, and it is easy to relate to the words of someone else who is going through the same thing, no matter if they are male or female. But still, there definitely are perspectives that are unique to women living with rheumatoid arthritis, and there are perspectives that are unique to men living with rheumatoid arthritis.

One of the motivating factors in starting my blog, beyond the therapeutic benefits that I have written about in earlier posts, was the fact that I was having difficulty finding and connecting with other male voices of RA. Sometimes, it feels like the only thing more lonely than living with rheumatoid arthritis is being a guy who lives with rheumatoid arthritis.

It often seems like I cannot read an article on rheumatoid arthritis that doesn’t start or end by stating that this is a disease that affects women much more than it affects men. While I know that this is indeed a fact of rheumatoid arthritis, I can’t help but feel brushed aside every time I read something like this. It sort of feels like rheumatoid arthritis is just a woman’s disease. As a man who lives with rheumatoid arthritis, I am just part of an even more invisible minority.

When it comes to my personal identity, I am already a member of minority groups in more ways than one. So I guess it’s somewhat appropriate that when it comes to my chronic illness, I am once again part of a minority group.

Being a guy who lives with rheumatoid arthritis means that, when I am walking down the street with my crutches, people often assume that I a dealing with a sports injury.

Being a guy who lives with rheumatoid arthritis means that, when I am unable to help carry a bag of groceries, strangers around me often assume that I am being lazy.

Being a guy who lives with rheumatoid arthritis means that, on top of the physical pain that I already have to deal with, I also have to deal with the emotional pain that comes from not fitting into societal constructs of “what it means to be a man”.

Case in point – headlines such as: “Rheumatoid Arthritis: Women Experience More Pain Than Men Do, Study Suggests“. (I think this is equally offensive to both men and women, by the way.) Do men experience less pain because they are stronger? Do women experience more pain because they are weaker? First of all, pain is a subjective and personal experience. Second of all, did anyone conducting this “study” ever stop and consider that men have a tendency to less readily admit to having pain?

I for one, have no interest in whether living with rheumatoid arthritis is worse for a man or for a woman. Each one of our stories is personal, and is not something that should either “more real” or “less real” based upon an individual’s gender.

And being a Latino guy who lives with rheumatoid arthritis mean that, in addition to bumping up against commonly accepted ideals of masculinity, I also have to deal with culturally distorted definitions of virility and chauvinism – otherwise known as machismo.

Come to think of it, I think Rheumatoid Arthritis Guy would make an excellent  lucha libre performer – I already have a cape…all I need is the mask!

Joking aside…

I find comfort in the knowledge that have always tried to lead MY life. Not conforming to (stereotypical) models can often bring up issues of its own, but I would not have it any other way. If I feel like crying, I cry. If I need to ask for help, I ask for help. I honestly believe that one of the biggest strengths any person can demonstrate is the ability to admit weakness.

In the end, the best part about being a guy who lives with rheumatoid arthritis (for me, at least) has been having the opportunity to learn that real strength has absolutely nothing to do with muscles.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

31 Comments
31 comments
  1. Linda C says:

    I admit to thinking that RA is a old women’s thing too. It was not until I read some of the support groups I learned how many young people have it. How do you male buddies treat you?

  2. Joanne says:

    I do feel for you here, it must be a tough call to feel slightly discriminated against, on top of everything else.

    I have been blogging for a while but have jsut set up a new blog devoted only to my arthritis journey.

  3. Laurie says:

    Another great post, RA Guy. The only 2 persons I knew that had RA before I was diagnosed were my paternal Grandfather and uncle, both on my dad’s side. My grandfather’s RA hit in his 60″s right after he retired…I remember sitting next to him on the couch and being amazed at his wrists and elbows, they were so inflamed and hot. To me, at 10 years old, he changed before my eyes. He could no longer pick up my younger siblings or go bowling, his passion. He used to play jazz piano, and could no longer do so, and he had to stop driving. My grandparents had planned to retire somewhere warm, but became dependent on my mom and dad for transportation, shopping and heavy cleaning, with us kids helping. I was oldest, so I actually got to fill out the checks for their bills, to me it was fun being a private secretary! I don’t think I really knew how bad he felt about having help until I turned 16 and got my driver’s license. Any excuse for me to drive was great for me, but humiliating to him. (Grandma had severe vision problems and mobility issues from a prior accident) I would drive him to the doctor to get his gold shots, which he said never helped, and he lived on aspirin that tore up his stomach (no prilosec back in the 70′s)
    When my uncle retired from the military, his family moved back to our hometown. He had to take an early retirement from the airforce due to RA and ankylosing spondylosis.
    Both of them, in retrospect probably had severe depression; but I just kept thinking that RA was a disease that targets men. Even after graduating nursing school, i never saw a patient with RA until I started working OB in 1985, and then it would maybe be one woman a year, who was in remission from the pregnancy.
    When I finally had symptoms in 2003 and saw my RA doc, I fully expected to walk into a waiting room of older men and women…wrong. Most everyone was a female, 40-50 years old. My infusion buddies were all females, Tom, our lone male male buddy would call us his harem.
    Where I live in Florida there is a huge Hispanic population, and the role change to being dependent is profound, having great social implications.
    We females have a different set of problems to deal with. Not only are most of us full time in the workforce and raising a family, we are faced with the labels of “lazy” or malingering because we have to choose which role we play. Since I was diagnosed in ’03 and started the first downhill battle, work had to come first, as I am a single person with bills, and too stuborn to cave in to the RA. Being a nurse, I only work 3 (12hr) shifts a week. I used to pull extra shifts whenever I could to finance my travel adventures. My housework is my lowest priority, and my social life wavers due to how I feel. My friends just didn’t understand that I could go from achey to full blown misery in an hour, (and most of my friends are nurses)
    I finally last fall decided I had to organize things so I could have a life. I decided to work FRI-SAT-SUN nights so I could have weekdays off for Dr. Appointments and PT. Most Sundays are quiet at work, so I volunteer to be put on call first. Mondays are my crash and burn days…I take my enbrel and sleep all day and night. By Tuesday I am half human again, so I try to get my housework caught up. (my son will come over during the week to vaccum and carry in the heavy groceries from the car, ie..cat litter,etc and do things I can’ quite do)Wednesdays and Thursdays I try to get out to dinner or a movie with a friend or my sons. It dosen’t always work out, but I try.
    Your posts are always spot on, and a source of inspiration, and I thank you for that. Next time I go to Mexico I will buy you a lucha libre mask to match your cape. Until then Vaya con Dios!
    Laurie

  4. Cathy says:

    Excellent post RA Guy! I think being a man and having RA would be a challenge. I can see people thinking each of the things you mentioned. It is funny because when I first started reading articles about RA I always felt they weren’t talking to me because they would always mention losing weight to take some of the burden off the joints. I felt offended because I didn’t need to lose weight. At 36 years old, I was working out daily and watching my food intake. Oh well! I finally just stopped reading the articles!

    Thanks for showing us another side to this disease.

  5. Rebecca says:

    Great post and great points! It’s offensive and misleading to say that men with RA don’t feel as much pain as women do. We need to remind people that arthritis isn’t just an old person’s disease and that it isn’t just a female disease either.

  6. Hazel says:

    RA Guy, I recently found your site and look forward to reading each one. You are doing a beautiful job!

    I”m 39 and recently diagnosed. RA has turned my life upside down. Reading your articles remind me that I’m not alone.

    Thank you for taking the time to blog and doing such a great job!

  7. Kali says:

    Whenever a study shows that one gender feels pain ‘more’ than the other, I always laugh myself silly.

    As if gender made a difference in pain! Study after study has shown that the differences between individuals are far greater than the differences between genders.

    I feel like I’m a minority among minorities, too – my disability doesn’t fit the models I see most often (‘traditional’ traumatic disabilities that are relatively constant from onset, AI diseases that wax and wane, and disorders that have been like that since birth or childhood). My disability is dramatically inconstant on some levels, but very much constant on others. It affects every system of my body. I can’t tell you the number of times I have bitterly cried, “Why can’t this leave ANY part of me alone?!” I look at people who know what to expect from their disabilities, and I am jealous. I see people who have times when they can pretend they are healthy and I wonder why I don’t get those, too.

    Ah, machismo – sawing at the self-worth of men who are not brawny and sex-driven all the time! I may be a gabacha, but I certainly saw how much hell it could be for good men who didn’t fit that stereotype. Not to mention the amount of teasing I caught (as most of my friends are male, and apparently stopping for smoothies after work with a married friend is dating!)

    ~Kali

  8. Kali says:

    …I forgot to add, the study after study have been mostly in cognitive and ability studies, but that I suspect the results for pain would be much the same.

    and remember, my dear RA guy – la cabesa es la parte mas atractiva del cuerpo (I hope I didn’t mangle that too much)

    ~Kali

  9. RA Guy says:

    I appreciate everybody’s feedback…it’s good to know I’m not alone in my feelings.

    I just came across this press release: “Rheumatoid arthritis is associated with poor sleep in women.”
    http://www.eurekalert.org/pub_releases/2009-06/aaos-r060309.php

    I emailed the contact person to ask if any men were included in the study. (The press release only references 133 women that took part in the study.)

    So funny, just yesterday I was talking to one of my doctors about how RA has been affecting my sleep…but I’m just a guy. Grin.

  10. Laurie says:

    “Rheumatoid arthritis is associated with poor sleep in women.”
    DUH, what rocket scientist figured that skewed study?
    Anyone with chronic pain has sleep problems, and most people could figure that out on their own. I hope the investigator is getting the good sleep we are missing!!!

  11. raandme says:

    Great post! It’s funny because lately, everytime I read something about R.A. and women my mind has automatically thought of you. In fact the other day I was reading Sarah’s awesome sick chicks club and outloud I said, “Aww. What about the sick dudes?” It had me thinking about how it must be hard for guys like you. And then you write such a wonderful post adressing the topic.

    You know what? Im positive your blog has already started raising awareness for men with R.A. It’s already changed the way I think! Keep it up. You rock!

  12. sara says:

    this post is exactly why I think it’s so great you started blogging. I know a lot of things that I have written have completely been from the perspective of being female, since that is my experience, but you are so right. This happens a lot with breast cancer, too. Men do actually get breast cancer, but since it is so often associated solely with women, men become outcasts to a community of people who could be supportive. I hope that your blog will encourage other men with RA to speak up. Thanks for writing this!

  13. RA Guy says:

    raandme and sara, thank you for the kind words of support…it’s good to know that guy or gal, we are all in this thing together!

  14. Mikel says:

    I have to say it is very interesting how RA has effected me as a bloke.

    For one thing, my marriage broke down. The fact I couldn’t move, all I did was moan about laying on the couch. To be fair, I became a grumpy git to live with as I was always in pain.

    Still, I was classed as ‘lazy’. Where I worked were (and are) great with letting my days days off at short notice or working from home. Being a website bloke, I can work from anywhere. Still other guys at work complained about the fact that I got to go home early.

    Our company does a internal magazine to all staff, and the lady that wrote it at the time asked if she could do a piece on me and my illness. I ended up writing an article which explained RA and how it effects me – since then no one has complained.

    The only bad thing that happens sometimes, is when I’m feeling good and not ‘lazy’ I over compensate. Always a bad thing to do.

  15. Chris says:

    I too am a man with RA. I was diagnosed almost 2 years ago. I feel your pain emotionally and physically. I heard many forms of derogatory comments about my physical abilities and being lazy after dealing with the constant pain. Carrying groceries might as well of been carrying the Empire State Building.

  16. Phil says:

    I was almost glad when I finally found out what was wrong with me, it was frustrating trying to figure out why I kept swelling up. I know about the same number of men with RA as women so I guess I’m in the minority. Nice to read some blogs and hear what other folks are doing.

  17. Ray says:

    Wow, I was really beginning to wonder if I was just out of my mind. I am a guy with RA. Diagnosed 3 years ago this month.

    My first Rhummy doc and his staff treated me well. A couple months into the beginnings of Methotrexate, the Nurse Practitioner in the office (a female) commented on how few men were patients. I just figured the guys had a different doctor. I know for sure, there are none out there just gritting there teeth and toughing it out. That pain is not the kind that can be ignored.

    I had a new job at the time and seemingly overnight could not get out of bed in less than one incredibly painful hour. My ankles would not function. Forget my shoulders, my wrists were as big around as my forearms. That is when I finally went to see my GP. He gave me my first pack of Prednisone and sent me off to the Rhummy Doc.

    To make a long story shorter… Today I am on Humira + Injectable Methotrexate, Folic Acid + B12 per my Rhummy Doc. I work everyday and feel pretty good overall.

    I will never forget those first few weeks. I hate prednisone, but it kept me from jumping off a bridge, more like falling (Jumping would not have been possible) … There is no pain like no pain!!

    I had to leave comment, there really are guys out here battling RA same as the Gals :)

    Regards,

    Ray

  18. bmoney says:

    I’m 25 and male, so I get the “you’re too young” and “that’s a woman thing” both. I don’t see it being any better or worse for a guy. For years I beat up on myself thinking that I was lazy and that’s why I would let aches and fatigue keep me from being productive, and I suspect that I might have come to the conclusion that “it’s OK to be sick” sooner if I didn’t have some perverse sense of toughness that is loosely associated with manliness. So, while I don’t think society has made coping tougher, I might have.

  19. Tedw/ranjax says:

    I was so glad to run across this fourm. I have just recently been diagnosed with RA and being a male with this makes me feel weak. My wife is old fashioned, as in the man runs the household, and as this got progressivly worse I got to the point I had to ask my wife to open a water bottle!! That was the hardest thing I have ever had to do. I felt like I can no longer be the man that has always ran the household. Luckily I have an amazing wife that can change with the times and support me even if it has been a bad month or year. Hopefully my dr and myself can figure something out to make this bearable for me.

  20. Jim says:

    I came across this blog tonight when I Googled “Men and RA.” I don’t know any men with RA – sort of a solitary circumstance. I’ve had RA for about 18 years. Fatigue and achey ankles are my occasional symptoms now. The Humera does a pretty good job. I was overwhelmed at first before diagnosis when I could hardly crawl across the kitchen floor or pull books off the lower shelf in my classroom. My biggest struggle now is the uncertainty of the future – wondering if complications will develop and just the identity of having RA. I’ve gotten better at living day to day and being grateful for good drug therapy. My other struggle is starting and staying with an exercise program. How have others done this?

  21. Thrive With RA™ says:

    Hi RA Guy,

    Thanks for sharing your perspective of being a man with RA. As a PR professional, I noticed immediately upon my own RA diagnosis how infused with the female perspective and image the media is for RA. From logos of major online RA health forums, to a variety of medical and pharmaceutical media, the message has been quite ostracizing for men in my opinion. As a mother of four sons, I’m a bit outnumbered in my home, but it does keep me quite cognizant of the male perspective. I hope you will continue to share your “minority” ;) male RA perspective on RA, as I am quite confident I am in the MAJORITY when I state your writing style, messages and sense of community are wonderful! Thanks! :)

  22. LHA says:

    Hi RA Guy,

    I am in a particular situation and I will like some basic information in how did you find out that you had RA.

    My problem is that my wife has RA, she was diagnosed around 6 to 7 years ago, so I decided to take over the majority of tasks at home from her; but know after having a small idea how RA affects people I started seeing some of that in my self maybe over a year ago, plus your are completely right been Latin doesn’t help when looking for help. I don’t want to say anything to my wife, she believes that I am just getting lazy as I am getting older, but things are taking the double of time to get them done than before. Everything hurts specially my hands and knees; I am just looking for some inside information before I ask her about her doctor information.

  23. Lee says:

    Another man here diagnosed almost two years ago. My Dr was a great doc and man who with his many years of exp knew what I had early on. But mine was non serum ra so help from rummy docs wasnt comin til he vould prove it. So I suffered a long time. It took my job and all my hobbies. Many times I wonder why bother at all. I’m looking at a new line of work with my own hours. Trying to make adjustments to the flare ups is hard but the meds help some. I think what makes me the most peeved is most people think ra is just regular arthritis and just assume your lazy or a complainer.

  24. Jeff says:

    Hello, I am also a man living with RA. I was diagnosed 4 years. I am still working but it is really difficult. I have experieced the oh I have arthritis to more time than I care to count. I also get oh my grandmother had authritis. People have no real idea what an autoimmune disease is or what it and the drugs do to you. My fingers have started to twist and I have a lot of difficulty walking. Its nice to know there are other men out there dealing with all of this. Not to minimize you ladies who are also dealing with this devastating and frustrating disease. Be well!

  25. David says:

    I was diagnosed with RA just last week……my symptoms have presented themselves concurrently with a cervical disk problem. I will have a C5-6 decompression and fusion next week. The following week I will start on Methotrexate. I am overwhelmed.

  26. Wayne says:

    Glad to see all you guys posting! I was starting to wonder if I was the only RA guy on the planet! I was just diagnosed a week ago, but after reading up on this think I have probably been overlooking the symptoms for a long time. Going to see a rheumy next week. RA Guy – thanks for the blog!!

  27. Parker says:

    David,

    What were your RA symptoms?
    I’m a wreck.
    My Chiro just diagnosed a C6 problem, & I have what I think are symptoms of RA & am overwhelmed. Seeing MD tomorrow.

    Just wondering what your first symptoms were. Thanks!

  28. Donna says:

    I am the wife of a man with RA. He was diagnosed years ago when we
    were actually at doctor for numbness in his toes. A blood test came
    back with RA markers but he had no symptoms and was never treated. My
    man is also a Vietnam Veteran that served a year in Saigon. We are
    convinced Agent Orange caused him to have RA but the VA doesn’t
    acknowledge RA as AO caused. The last 10 years my husband has gotten
    stiffer and stiffer. His toes are taking on a claw hammer position and
    he has the tiniest of bumps (nodules) on the middle joint of some of
    his fingers. He hurts all over in his hips, shoulders, knees and
    ankles. He has also been diagnosed with dry eye by the VA and uses
    artificial tears.

    We went through all kinds of tests thinking he had Parkinson’s but the
    movement specialist told us last week he does not have it. So now we
    are going forward asking his VA doctor for treatment for RA. They will
    probably send him to another rheumatologist for tests since it has
    been over 10 years since he saw one.

    My question to all of you guys with RA is this. Do any of you have all
    the pain without visible swelling? My husband does not swell that we
    can tell on the outside. This is the one thing that confuses me since
    everything I read about RA and the women I have talked to that have it
    always mention the horrid swelling that is visible. I am still not
    convinced my husband does not have Parkinson which presents with many
    of the same symptoms. He has been diagnosed with Essential Tremor for
    the shakes he has. But we are ready for any treatment that will
    control his constant pain.

  29. Sylvia Reynolds says:

    It doesn’t matter what sex we are when it comes to ra,it is still the same pain whatever sex you are and we are in this altogether.xx

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