Men and Rheumatoid Arthritis: Video PSA

Men and RA PSA

Why a video about men and Rheumatoid Arthritis?

This video PSA (public service announcement) is something that I have wanted to finish for months because the story about men and Rheumatoid Arthritis has not been told. I also believe that telling the story of men and RA will help everyone who lives with RA by creating a more accurate impression of RA.

Important things this video PSA demonstrates:

1) Although it affects more women, RA has destructive effect on the men who live with it.

2) Men who live with RA face distinct challenges in their work, family life, and in society.

3) The world has an incorrect notion about RA which we are challenging and changing. I cannot say it better than one man who wrote to me recently:

“How do you explain the blinding pain of RA to others who think it is ‘a disease depressed women get’ when you are 6′ 2″  230 pound male who last year was still stronger at age 53 then nearly any 20 year old? And now cannot lift a jug of milk without feeling like it is ripping the fingers out of his hands?”

Thanks to everyone who has helped & will help make this PSA succeed

I’m extremely thankful to the many men who participated in the making of this video. Several sent me photos even before I asked for them, telling me to use them to tell the story of men and RA. Others have commented on the blog or participated in discussions on Facebook or Twitter, enlightening us about the challenges they face.

If you think this message is important, please help make this video popular on YouTube. You can help spread the word:

  • Watch this PSA again.
  • LIKE this PSA and comment on YouTube.
  • Share this PSA with social media such as Facebook, Twitter, StumbleUpon.
  • Embed this PSA on your blog or website.

Recommended reading

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

46 thoughts on “Men and Rheumatoid Arthritis: Video PSA

  • March 28, 2011 at 3:19 pm
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    WOW…. What an awesome video you made!!
    It was wonderful Kelly.

    Thank you for all you do

    Kim

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  • March 28, 2011 at 3:22 pm
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    Great job, Kelly! I wish I could have found some pictures of my grandfather who had severe RA. I remember thinking I was really hot stuff when I got my driver’s license and I got to drive him to the doctor for gold shots, followed by a stop at the drugstore to buy more aspirin. Never thought it would be me who inherited the RA gene!

    Reply
  • March 28, 2011 at 3:42 pm
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    Wow! What an awesome job Kelly!! My brother also suffers from RA like me, but is discriminated against and thought poorly of even with visible evidence of the disease. I am forwarding this to him right away. Thank you for another great piece!

    Reply
      • March 29, 2011 at 3:34 am
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        Actually mostly everything does, just not this..hehe

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  • March 28, 2011 at 6:17 pm
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    Great video Kelly, well done!

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  • March 28, 2011 at 6:37 pm
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    WHEW! INTENSE!! I would comment more but I can’t wait to watch it again….and again.. and again and send it to everyone I know!

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    • March 28, 2011 at 6:48 pm
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      Yes! Do watch it again! I had to re-upload it so I lost today’s hits. Let’s make this the most popular RA vid on YouTube!

      Reply
  • March 28, 2011 at 7:30 pm
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    Thanks for the video Kelly. I like it. One comment resonated with me. The one about not being dependable like I once was. It hurts me enough to know it myself, but when my wife says it to me it just cuts me to the bone. I told her that that bothers me but the message was not received as she still says it from time to time. Maybe someday she’ll understand. I do what I can but sometimes it just isn’t good enough.

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    • March 28, 2011 at 8:16 pm
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      I tried so hard to “hear” what needed to be said & be a channel. It makes me glad that you approve. I want to help amplify your voice(s).

      Reply
      • March 28, 2011 at 11:16 pm
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        You succeeded, Kelly!

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    • March 28, 2011 at 8:17 pm
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      This video is made for your wife. I hope it helps her to understand. We shouldn’t have to fight this extra battle to bring awareness. Thank goodness Kelly does so much towards that.

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    • March 28, 2011 at 11:50 pm
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      I am so sorry your wife says that. my husband does not get it either. he does not get the fatigue or the fact what i used to do 1 year ago now tires me out in half the time. I am so sorry.

      Reply
  • March 28, 2011 at 10:04 pm
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    I want to reiterate what I said on Youtube:

    I am very proud of what you put together, Kelly. I think b/c there are so few of us (as we know almost 3 times asmany woman than men), our unique challenges are often overlooked or misunderstood. I always say – we face DIFFERENT challenges, not harder ones, and I think you really captured the essence of what we deal with. I’m so thankful for this, that you are saying what I’ve been wanting the world to hear! THANK YOU! Great work

    Reply
  • March 29, 2011 at 2:56 am
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    Way to go Kelly! It says a lot about what this disease is. Difficult. For all.

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  • March 29, 2011 at 4:27 am
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    You outdid yourself Ms Kelly of RA warrior and the men that shared their voices on this video. I can imagine how tough it is being a man with RA and the role society has put upon you as men, to be strong against all odds. Makes me think of my husband’s Grandpa Knox, running a ranch in Montana with RA and no good medicines to back him up. I have heard stories of him traveling far to some Hot springs (healing waters) in hope of some relief.

    He made it work somehow, with the help of strong young grandsons and adapting to his disability the best he could. Tomorrow, I will have my husband comment here of what he remembers. I think Grandpa had his horse come up to the fence so he could easily climb on up.

    Back then, if there was a will, they found a way, and we are not much different in learning to adapt these days. I strive to live this way, remembering how much easier we have it now compared to then. More tomorrow…

    Reply
  • March 29, 2011 at 9:27 am
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    Thank you so much Kelly, because of my RA being rampant lately I have been out of touch for a while. Mostly the fatigue, but apparently I now have upper neck involvement. It is so nice to know I have a friend that speaks for me. Bless you, and all you do.

    Reply
  • March 29, 2011 at 10:32 am
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    Kelly-the Heart that keeps on giving! Thank you for a wonderful much needed video.

    Reply
  • March 29, 2011 at 11:39 am
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    What a fantastic accomplishment Kelly. Even if I didn’t have RA your video would make me stop and think.
    All you guys out there are an inspiration – I recognise how difficult RA must be for you especially given society’s and even family and friends’s expectations can be. To the guys who sent their photos “Good Onya” (as we say in Australia) for putting yourself out there!!
    Inspirational, simply inspirational.

    Reply
  • March 29, 2011 at 12:08 pm
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    Thank you, my girls think they are famous for being on “You Tube”. Some of the things stated in the Video were so true I felt has if someone was listening to my inner feelings and thoughts. Been playing it here at work and must of my fellow Police Officers have said “Dude,I had know Idea it was that Bad, you don’t look sick” Thank You for helping me explain…..

    Reply
  • March 29, 2011 at 2:35 pm
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    Wonderful PSA. Thanks!

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  • March 29, 2011 at 2:43 pm
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    Funny seeing my wheel chair tweet show up!

    Reply
  • March 29, 2011 at 3:42 pm
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    Great job, I see so many older men in the hospital where I work with untreated swollen joints, in denial about RA, I hope the PSA helps. I worked pediatrics for years, maybe a video/PSA with the kids would help spread the info.

    Reply
  • March 29, 2011 at 9:00 pm
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    Great Video and a job well done. I am new to RA warrior and just wanted to tell everyone hello. I think the best thing we all can do is to keep a positive attitude. There is always someone worse off than me and I am just thankful that I’m me.
    My cup is always half full..
    Keep up the good work..

    Reply
  • March 29, 2011 at 11:13 pm
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    Excellent Video Kelly! Plan on sharing with everyone I know!…

    Reply
  • March 30, 2011 at 6:24 am
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    It’s the same for men and women, wish I had a partner that was as willing to share and understand.

    Reply
  • March 30, 2011 at 7:08 am
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    This is an amazing PSA. Kelly, once again you have outdone yourself. For all these men, know you aren’t alone in your battle, and I am always willing to listen.

    Kat

    Reply
  • March 30, 2011 at 11:23 am
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    That was a great PSA Kelly once again you have come through with the goods! I can see how this would be to men! I also understand how it is to know your partner doesnt understand what you go through..mine doesnt either! He expects me to have the house and all done if im not in bed! Thanks again Kelly.

    Reply
  • March 30, 2011 at 11:37 am
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    Thanks for this Kelly! I’ve been buried in work the last few weeks and haven’t kept up with your posts — this was wonderful to see this morning. Especially since I’ve had some significant flaring (always happens after a hiking out) and some new issues develop.

    Which reminds me, do you have any data that would link RA to tinnitus? I’ve had a slight buzzing/ringing in my ears for about a week and naturally wondered if its related to RA or perhaps Enbrel.

    Reply
    • March 30, 2011 at 11:51 am
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      Thank you, Dan. I was glad to feature 2 of the photos you gave me. I’d hoped you’d like it.

      I’m going to have to put up a poll on Facebook or something about the tinnitus. I haven’t seen any research on it, but I’ve heard this question from 2-3 patients who don’t use NDAIDs. If you used NDAIDs, that is easy to blame. I’m very suspicious since there are bones / joints inside the ears.

      Reply
      • October 18, 2011 at 10:11 pm
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        Kelly, I have tinnitus almost all the time. Who knows which meds it’s from. I take Vicodin, an antiinflammatory ETCODOLAC and Tramadol, any or all of those could cause it. I’ve told doctors and nurse practioners and they just ignore it, like everything else. So I just block it out like I do with so many other symptoms.
        Thomas

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  • March 30, 2011 at 1:02 pm
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    Wow, I think that every one of the quotes in the video, I have said or thought at some time, just not in such a poetic manner. I do get the feeling like I’m the only one sometimes. I have tried to do the math before…1.5 millions Americans have RA, 1 of 4 is male, 8% are ages 18-44, 5% are veterans, either way it comes down to feeling like I’m alone in my fight. And truthfully, I may be. Nice to see stuff like this that proves there are others dealing with the same everyday crap as I deal with. Thanks for posting this Kelly.
    David

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  • March 31, 2011 at 1:25 am
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    Kelly, well done! Thank you for putting this together.

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  • April 2, 2011 at 9:18 am
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    Powerfull statement! In a society where men are supposed to be the strong one the challenge of RA posed the question of gender identity. RA does not discriminate.

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  • April 4, 2011 at 8:23 am
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    I’ve known 2 men with RA; one I worked with and knew before and after the RA hit and one who’d had it for 25 years. The man I worked with got attacked overnight in his feet. He tried to get out of bed and fell on the floor. The methotrexate treatments were making him so sick, he took them on the weekends but was still sick on Mondays. He was laid off; figures, doesn it? The second man I met told me what his life had been like over the 25 years he’d had RA. He could get shoes on for only a very short time; the rest of the time he wore some kind of sandles because they were the only shoe that didn’t hurt his feet/toes. I never did find out what happened to the former co-worker. I just know that RA changed his life forever. I realize that the pressure on men to “act like men” has to be terrible in the face of a crippling disease. However, of all of the women I’ve known with RA, including myself, none of us complain, nor do we find it easy to ask for help. If I can’t pay for the help, I don’t accept it. My family is so messed up that, even though they live within miles of me, it’s like being an orphan with a live family. I get no help or communication from them of any kind. When I was working, I was earning a significant amount of money; they all needed me then. All but one lived with me at least once; some many times. When I was laid off from being sick, they disappeared out of my life as well. RA is hard on everyone; those who have it and those who live with someone who has it. I just know that it is harder on those who have no help. I felt for the man in the video whose wife left him. If you don’t have it, it can be hard to understand what it does to you.

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    • April 4, 2011 at 8:29 am
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      Good points, Susan. RA is always hard (I guess unless it’s a very mild case) – male or female.
      …I remember more of that man’s story. His mother had had RA and he had not understood it. It was sad the same thing happened to him.

      Reply
  • October 18, 2011 at 10:00 pm
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    I was very surprised to find the video about men and RA. I was diagnosed 7 years ago and I thought my life was tough before that. I don’t even know how I survived some of the things that happened because of RA. I suppose I’m more stubbornly defiant that I realized. It’s not just the RA that can get you, it the health care field, medical insurance and even family betrayal. At one point we lost our med insurance and I was quickly running out of meds. I then got the flu which made the RA ten times worse. Then my son caught my wife (a nurse mind you) stealing my Vicodin and I was down to 1 a day. For 2 months I lay in our dark basement in excruciating pain and came so close to ending it. Is that a super sob story or what? There’s more, but it gets boring after awhile of hearing near death experiences. But I’m still kicking and life is pretty good at this point. I receive SSI and VA health benefits. It’s not much, but it feels like a great treasure to me. My needs and wants are simple.

    I wouldn’t say that men have it harder, just different. One part mentioned how people say to men, “you don’t look disabled” having no idea of the pain being endured with a smile. To look disabled is to be vulnerable and there are those who prey on the vulnerable. I was an extremely good fighter in the military, but now I might last a few seconds. If I have to fight I’ll sure make those seconds count and the RA be damned. One man said he couldn’t protect his family, why not? To hell with pain and limitations, I refuse to be vulnerable. It’s a macho trip alright and I’m glad for it. It’s what gives me the strength to fight this thing.

    Recently I’ve taken up an old hobby, building plastic scale model kits. These are extremely complex miniatures and a model can have hundreds of pieces, many being really small. When I buy new model kits I feel like I’m 12 years old again. It’s an amazing challenge, but I found it has the most remarkable benefits. It is so enjoyable and takes so much concentration that I found fatigue and depression all but disappear. I am forced to figure very creative ways to use my hands, so the therapy is extremely good. I often have to hand paint very small pieces and I’ve actually learned how to do it timing my shaking. It’s down right hilarious to see. My son can’t believe I can build these models so well. I’ve been thinking of doing YouTube videos on it so it might help others with RA.

    Sorry for the long speech, I’ve never had anyone who really knows about RA to talk to. So many times I’ve wanted someone to hear my excessive self pity and my bragging about my victories. This has been the ultimate roller coaster ride. One thing for sure, the more I fight it the stronger I become. It may one day kill me, but it will never take my dignity.

    Thomas

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    • October 19, 2011 at 12:49 pm
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      Hi Thomas Read your post. You have come to the right place. If it wasnt for Kelly and her great site i would have went crazy along time ago. Though some would say im crazy now..oh well..Your words surprised me? Im just not used to hearing this from men. We all feel your pain and wishing you the best. Kelly and these folks all know what your going through.I t does help alot to share or it has for me. Im not alone anymore. The part about people looking at you and saying you dont look sick.Yes that is hard somtimes harder than being sick.Glad you found somthing to do that you like. So important. So take care and welcome..

      Reply
      • October 19, 2011 at 3:46 pm
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        Thank you, Judi.

        Men do tend to suffer in silence. I do that quite a bit, but I also allow myself to express how I feel. It’s especially important to express it to family and friends because they want to know and help. Denying them that is so wrong, but men tend to not think about that. I regard suffering in silence as a form of self pity. It takes strength to admit the truth, that you’re not great and powerful warrior anymore. This stuff can make you feel like a helpless baby. I learned a long time ago that true strength and power comes from withing, not how you appear.

        At least my RA is fairly predictable. I know that Spring and Fall will bring a period flair-ups, aching and fatigue. That’s what I’m going through now. I’m unable to build my models, so I sit back and watch my collection of movies and TV series and daydream. The more I relax the easier it is. I actually find it mentally stimulating in figuring ways to cope and ease the symptoms. It’s more about the mind than the body. I’ve even learned to completely block out moderate pain. See, I’m a bit crazy too, but crazy can sometimes be a good thing. 🙂

        Thomas

        Reply
  • April 23, 2013 at 6:27 pm
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    Thanks for the Video Kelly,I have the full support from my wife, kids and close friends. But the people that are just outside the tight circle of family and friends that I deal with on a daily basis don’t understand. I frequently get the yea I have that in my knees BS. Today my job put me on short term disability. Now I have a new chapter to deal with mentally. I believe it will just take time to realize that I have to deal with this blow with my head up and not be so depressed. It took me a while to deal with the news about being diagnosed with RA back in 2007. I hope that the men who have this disease can unite and help each other with stories and humor.

    Jeff

    Reply
    • April 23, 2013 at 6:29 pm
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      BTW I live in LA Verne Ca if any guy wants to meet or start a group.

      thanks

      Jeff

      Reply
  • May 17, 2013 at 7:02 pm
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    Day Three

    I hope that I can find the strength

    Reply

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