The Use It or Lose It Approach to Living with Rheumatoid Arthritis | Rheumatoid Arthritis Warrior

The Use It or Lose It Approach to Living with Rheumatoid Arthritis

use it or lose it RA

Does Use It or Lose It Work for living with RA?

Gee, I hope you won’t mind another beach story. Here is a different view of the same beach.

Right about the time I was finally diagnosed with Rheumatoid Arthritis, I got a call from a friend who was coming to the coast for a vacation. “Bring the kids and come out to the beach and see us,” she said. I really love to visit friends. Of course, I love the beach. And, like most people, I hate to say, “No.”

So, I set out to manage the beach. At this point, the Rheumatoid Arthritis had only disabled my shoulders and my feet. It was pretty early in the process. However, the disability was extreme. I no longer washed my own hair, much less styled it. Walking was difficult. My kids helped me do everything that I did do – and did the rest for me entirely.

Like I said, this was early in my living with RA process. So I did not realize how my friends would react to the Rheumatoid Arthritis. I assumed that they would accept me as they always had, and perhaps even sympathize with my plight.

These friends had always been particularly kind to me. We had laughed and cried and prayed together. They had noticed more than once when I needed something– and given it cheerfully without having been asked. So I was shocked at the reaction to what RA had done to me.

At first, there were merely disapproving looks because I let the kids carry all the stuff onto the beach. There were lots of stairs around the condo and I was having a hard time getting around. I had learned to lean on the shoulder of my son to help me walk. I did not say anything, but I was always several paces behind my friend. She’s the “Why walk when you can run?” type – like I had always been. (See Makeovers and Bag Ladies.)

I just couldn’t keep up with her and she seemed a bit annoyed about it. But, I hoped I was wrong in my perception. Maybe she was stressing over something else.

When we were finally seated on the beach chairs, I waited for a good opportunity to tell her about the Rheumatoid Arthritis. It was awkward, but it never occurred to me to give up. She was a friend, after all.

However, neither sympathy nor empathy was forthcoming. There were a few comments about how her pains were worse than mine. I would rather be friendly than pushy, so I gave up pretty easily.

She carried my beach chair on the way back up to the car. I will never forget what she said to me, “You know, Kelly, what I have always believed? You either use it or lose it. Do you know what I mean?”

If only I could find a way to live in her reality – where Rheumatoid Arthritis is not real. How can I get into THAT reality? I only gulped. I did not reply. But now that I have had a few years to think about it, I know what I should have said:

“You know what I have always believed? Compassion—I always say—you either use it or lose it. Do you know what I mean?”

Recommended reading:

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

29 thoughts on “The Use It or Lose It Approach to Living with Rheumatoid Arthritis

  • June 6, 2009 at 6:27 am
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    HI Kelly. My name is Angie. I've been reading you blog for a couple of weeks. I was diagnosed with RA last September…..at 38 years old. This story left me with tears and a lot of empathy and sympathy. If I had a dollar for every time I've heard "sucks to get old" I'd be a rich woman. There are some mornings I don't know what I would do without my kids. My son who is 8 and my daughter who is 5 really do understand what this disease can do. My mother-in-law has it and when she was diagnosed there were no treatments like there are today. She has significant joint damage. My kids know how serious this is and they never question when I can't do something. My friends onthe other hand…..I don't talk about it too much. I have very few, like maybe 3 or 4, who are not uncomfortable to ask how I am etc but even then Ihave one who looks at me like I'm dying. There are days where I want to poke his eyes out. I am curious….do you still talke to this "friend" from the beach? It may not be too late to use that line. It's important for people in our lives to understand what we go through…..not to pitty….. just to understand why the have to slow down two paces, or carry a chair, or open a door. You are a brave and strong woman but I'm sure you've heard that before! My blog is called RA and Me if you are interested. It's nothing fancy.

    Reply
  • June 6, 2009 at 10:29 am
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    No, it was too hard to call her again. And she never called me. Sorry to report that.

    It may be a great help to you to have had this in the family already. So, they may sorta "get it" by now.

    We have a lot in common. I am a huge NFL fan also. Your blog is good. All of our voices are needed. I like your wallpaper especially. Hahaha. ;D

    Reply
  • January 9, 2010 at 3:47 pm
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    Your post is the brutal reality of this disease and how some others can react. It also made me cry. Thank you for this website, your posts have let me know I am not alone and have lifted my spirits on the low days. One thing I have learned though is the RA community is the nicest, and most couragous group I have come across in many years. We need a camp RA for the ones who could travel. Thank you again, unfortunatley for your friend she is the one who lost out on having a great friend, especially over BS like carrying a chair to the car. Bummer for her as she doesn’t sound like she could have been that good of a friend to start with.

    Reply
    • January 9, 2010 at 7:58 pm
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      Nikki,
      I wish I could say that after 4 years, it stopped being an issue that I deal with… At least I can say that it motivates me to press on with this blog when things get hard. I have to believe that we can make a difference just like the Who’s in Whoville in the Horton story. :chic:

      I love Camp RA! Someday, we will do it!

      Reply
      • March 10, 2011 at 9:01 pm
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        OMG! Camp RA! I did a lot of traveling before I went into remission, so I’m pretty good with the ins and outs of that, so I’m all for it! Just be warned, I’m taking this alcohol is good for RA thing seriously! (lol, actually, I have self-medicated with alcohol for years, and have read for years that it’s horrible horrible for RA. Was very surprised to see that study, and half-way wonder if that’s what put me in remission for so long)

        Reply
  • February 24, 2010 at 2:52 pm
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    This story reminded me of the 1st week I started having symptoms… I wasn’t diagnosed yet, I was 16.

    I was walking into school with my sister (walking = shuffling, in this case). My sister got annoyed with my slow pace and awkwardness and basically told me to “walk normally” and then stormed into the school doors. I’ll never forget that moment. I am pretty sure it impacted how I deal with my RA in High School. I didn’t tell people. Most people still don’t know I even have it (I guess I am lucky that way)… until I am shuffling around on a bad day. My sister is more understanding now… but what she said to me as a teenager was one of those comments that resonated deeply with me – and it will forever. She was saying what everyone else at school probably wanted to! I don’t blame her… she (and I) just didn’t know what was happening to me.

    Understanding and compassion go hand in hand.

    Reply
    • February 26, 2010 at 9:33 pm
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      You say, “understanding & compassion go hand in hand.” Do you believe there can be understanding and compassion for RA from those who do not experience it? People keep telling me “no” & I keep hoping it is possible.

      Reply
      • March 10, 2011 at 8:53 pm
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        I think that they absolutely do go hand in hand, but it’s hard for people to understand until they live it. I have a lot of stories about friends and frustrations (total social butterfly here!), but I also have quite a few about my BFF and a couple of family members who have been able to understand it.

        My husband is new to RA, since I was in remission when I met him, and I really didn’t want to talk about it at all (hey, it was behind me, right?), but he’s getting it, and trying really hard, and NEVER dismisses anything I say about pain. I imagine that, for a while, I will have to give him reminders (we can’t park this far away, or, if we have to, drop me off in front, etc), but he is, at heart, a very compassionate man.

        When my BFF and I lived the same place, she was -extremely- compassionate and helpful. She made sure she did all the right things, from dropping me off in front of someplace so I didn’t have to walk far, to making sure I got to sit next to an electric plug for my heating pad. I remember her telling me about a restaurant that had awesome food, then pausing, and saying “but you’ll want to get take-out, their chairs are wooden and very uncomfy). It took a bit of reading on her part to get it, but she did, and she is living proof that understanding and compassion go hand in hand.

        My mother, on the other hand, never understood, and I’m not sure she ever would have, until she ended up with vertebral fractures from osteoporosis. She’s a lot more understanding now.

        I guess the thing is that it takes different things for different people to understand. Some people may just have to live it (or something like it) to really get it.

        But this is why you are my new hero, Kelly. I think that people refusing to understand has, in some ways, been more painful to me than the disease itself. So, keep trying, and I’ll help! 🙂

        Reply
        • March 10, 2011 at 9:34 pm
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          Thanks for sharing your experiences. I can identify w/everything you’re saying here, too.

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          • April 4, 2014 at 4:20 am
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            Hi Kelly, I have moderately sever Ankylosing Spondylitis,with a four severely crippling flares over the last 7 years. I was also an athlete before and sometimes falter and become focused on the losses instead of living in the moment. After much frustration over my friends bizarre reactions and lack of understanding, I found it helpful to make a list of safe people to speak to about it and people who I absolutely should avoid speaking to about it.

            I’ve become pretty open about the illness in the past year as its become impossible to hide, I’ve found support in unexpected quarters and dismissive or disgust reactions in similarly unexpected places. I try not to judge peoples bad reactions, many react poorly because they are afraid and think that you must somehow be neglecting some avenue for cure or relief, “if you just exercised more, changed your diet, lost weight, took this or that supplement etc” people can’t comprehend incurable illness, they don’t want to believe its real, which is why I guess there are so many “cures” advertised. Frailty is not only something people don’t identify with, they don’t WANT to identify with it and would rather pretend it doesn’t exist or blame the frail person. Still it hurts and is so disappointing when those you have turned to for support for other life challenges become aggressive and unsympathetic when it comes to the biggest challenge many of us with rheumatic illnesses face.

            I took to using euphemisms when imparting the news because people tend to undermine the experience in the ways you and other commenters have pointed out. I began to feel quite lonely, but then on reflection realized that many people think about and understand illness and can provide support and sympathy. So making the list made me feel less lonely. I have one friend a very vital bubbly woman who totally shocked me by reacting appropriately saying “oh Margie that’s terrible, you must be so angry” she still asks me how I am and in a way that is affirming and non-pitying, another colleague whose daughter was going through the same thing sent me the sweetest email, commending my bravery in sharing my struggles with my colleagues, another colleague shared with me the experiences of a friend who had cancer and was afraid to get support from anyone because they all had a blaming, confrontational reaction, he frequently asks me how I am. So don’t let a few bad reactions make you afraid of letting people know and asking for help.

  • March 1, 2010 at 9:47 am
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    I say Yes!… just as I would try to be understanding and have compassion for a loved one with any other disease or illness. You never have 100% understanding of something until it happens to you (and even then everyone reacts differently) but a learning about the impacts of RA on a body can change someone’s perspective… hopefully.

    Reply
    • March 1, 2010 at 1:37 pm
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      Then I will keep trying to explain it. But it does seem impossible sometimes. Thanks. 😎

      Reply
  • July 21, 2010 at 11:11 am
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    I am currently experiencing this absolute lack of compassion and understanding from a couple of friends. The irony is that one of these ‘friends’ has always turned to me whenever anything has gone wrong in their life and I believe I have been there no matter whether it be day or night (as they live the other side of the world from me). Recently in quite a bit of pain after a ludicrous visit to my Rheum (which I’ll speak of another time) while I lay in bed not knowing where to put myself I received a text from my friend asking if I would Skype :computer: with them the next morning 8am (my time).
    With the usual morning stiffness and being Winter in Oz, I knew this might be a challenge. So I took a deep breath – managed to reply that the mornings were particularly difficult for me but would if I could. Turns out – I couldn’t.
    About 7am :yawn: a text comes in asking if I was awake and saying we could Skype earlier than 8am if I wished. I really couldn’t reach my phone and answer right then and didn’t read this until able to at least sit up unaided an hour later when another text – saying ‘well I guess not then – let me know when you feel like talking to me again’.
    It sounds simple and that maybe I’m overreacting. But those words were written with intent. The intent worked – I was so sad. I had explained at length previously that my RA was more difficult to manage at the moment (somewhat of a euphemism to say the least). That in itself was huge for me as like many of you – I intensely dislike showing people just how much pain I have.
    The only people who really know are my best mate who shares the house with me (and without whom I would not be able to manage) and my mum who has recently moved 10 minutes away after living a four hour flight from me and previously 12,000 miles. (My mum and I lived this distance apart for 25 years when I stayed in the UK initialy training as an RN while she moved to Australia to get married with my blessing as my dad died when I was 11 from bladder cancer).
    I know I am so very lucky in many many ways having the support that I do – even more so after reading how little support many on here have.
    It’s just strange how one ‘friend’ can make me feel guilty or rather how I can let one friend make me feel so guilty for just once taking care of me. Never once did I offer support with the thought ‘oh if I suppport them – they’ll support me’ – and the first time I say I can’t chat even though there was no particular problem just a chat – I become selfish etc etc etc.
    I suggested they look at your FB page which they did – and ‘joined’ – but just for now things have changed. I just hope if only for one minute – I helped someone understand a little. :-/

    Reply
    • July 21, 2010 at 12:23 pm
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      Hi Kathryn, “Ouch.” I’m sorry about this treatment & you know I understand.
      Hopefully, comments like yours will make an impact on those who read. I think most of us are like you and hide the extreme nature of the RA pain – probably because we don’t want to be doubted. I know it would sound like I’m exaggerating, so I only tell others with RA. We have to find ways to break down this wall.

      Reply
  • July 22, 2010 at 11:26 am
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    Absolutely Kelly without a shadow of a doubt. We have to live in hope of that understanding and pray that we get there – one shuffle at a time! :snail:

    Reply
  • October 15, 2010 at 2:22 pm
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    Kelly, loved your remark about compassion and understanding and Camp RA. It is true that travel is difficult for many of us. I have found that frequent stops along the way and taking two or three days for what used to be a one day drive really helps both me and my husband, who has back problems. We have a bed, which I have made very comfy, in our van, which really helps us with travel, too. I am not attending church this month because our church friends just don’t understand that we can no longer do the pumpkin patch, and we were tired of feeling harrassed about lifting pumpkins, sitting out in the heat and sun for hours, etc. A lot of people don’t understand that the meds many of us have to take make us very sensitive to the sun and lower our tolerance for heat to the extent that we will get sick if we get too hot and can’t get relief from it. After four years, the only one at church who really gets it is over 90 years old. Bless her.

    Reply
    • October 15, 2010 at 2:29 pm
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      Sad testimony Charlene. I wish that your comment could be printed & distributed in a church bulletin. Others have told me similar stories – maybe RA Awareness can start in the church. I’d like to see it in mine too.

      Reply
  • November 13, 2010 at 3:20 am
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    l told someone about my RA recently.she laughed actually! she told me she didnt have time to be sick,just too much to do!
    l responded,” really,you mean l have a choice to accept this or not?”
    she looked uncomfortable and was speechless.l smiled at her and limped away confidently.

    Reply
    • November 13, 2010 at 6:12 pm
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      I love your answer Trudii! I’m going to see if I can say that too.

      Reply
  • March 4, 2011 at 10:21 am
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    Kelly, I don’t know how I missed this story. I am so sorry that a friend would do that to you. This is why a lot of us don’t say anything and trudge alone physically exhausted trying to keep up with everyone else , with no complaints. I guess until we are so crooked will friends and family finally get it. You know I wouldn’t wish any one to have a disease, but take cancer, you say I have cancer, the person can look ok for a while and our hearts break for them. You say RA or Arthritis and everyone has it. It is just part of getting old.?????? I think we have become such a self centered society that we can’t see beyond our noses. It is always a one-up-man-ship. No one listens. Everyone is forgetting the golden rule.
    Well enough of my whining, after all it is just part of getting older.
    Best Steph

    Reply
  • March 10, 2011 at 8:33 pm
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    Wow, that makes me sad. I’ve had to deal with this sort of thing too, but misery does NOT love company where something like this is concerned. I will say this, though: finding your site has been the highlight of my month, and one of the best things I’ve found on the internet. It’s good to know that I’m not alone. <3

    Reply
  • May 10, 2011 at 8:19 am
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    Kelly, your post brought back many sad memories for me. I would get the disapproving looks, if I’d only lose the weight, if I don’t use it, I’ll lose it – the whole gamut. Its sad, but you’re right – the compassion is not there for those whom we expected more from.
    I’ve been up for almost three hours now, holding off on the pain meds as best I can and its not working. My hands are still stiff, my thumb joints sore, my shoulder and clavicle bones hurt and of course the knees and lower back. I wish I could ask your “friend” – Please tell me what I didn’t use and have lost? Please tell me how I could have possibly done this to myself? Please tell me WHY I would want this for myself!!

    Reply
  • May 10, 2011 at 8:48 pm
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    Yes, Kelly, your beach story and the other stories with the same sad theme are really a sad testament of the lack of compassion and understanding that many people show to RA sufferers today….If a person doesn’t have RA or JRA himself or herself, or know someone else with this disease, that person just doesn’t have a clue about the extent of the pain involved. Because my grandchild has JRA and a friend of mine has seen her on a few “good” or covering-up-the-pain days, this friend recently said to me, “Please don’t take this the wrong way, but do you think her pain could be mental?” In other words, this friend, like many of the doctors we all know, just couldn’t imagine someone of this child’s age, with a sweet smile and good looks, having the kind of discomfort that could be better understood perhaps if the person could view the child’s swollen knees and ankles and toes and hips and fingers and back etc etc. Why, indeed, would a kind and friendly 14 year old CHOOSE to miss out on so much of this special time of her life? She loved being a bouncy cheerleader, with compassion and friendliness towards all–and, although she is not as bouncy anymore, thank goodness, she still has her compassionate and caring disposition. Her friends and teachers recognize that her pain is real and try to help whenever possible …..unfortunately, as all these stories have shown, there are still many others who haven’t gotten the memo yet!

    Reply
  • July 15, 2011 at 11:23 am
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    I am very new to RA. But whenever I have mention RA the reactions are numerous. “Ouch!” say some (usually men strangely enough) Women I find are quite hardhearted. “You’re 51 years old, of course you have aches and pains” “Do you really need a stick?” What I find the quite hard is being some kind of beacon of hope. Whenever I go to church, which has a very small number of members, I feel quite guilty when I arrive limping or if I’m not able to say “I’m healed!” and do a cartwheel down the aisle! I don’t doubt some day I may be but until then let me alone.
    Quite often I’m tempted to just stay indoors but that wouldn’t help my quest to not be identified by RA. I existed before IT did, after all!

    Reply
  • January 31, 2012 at 8:07 am
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    Thank you so much. I found your website just a short while ago. I live in Dublin, Ireland and have had RA since 1997.
    Its getting progressively worse and my prescription (MTX & Enbrel) has run out – am still waiting to hear back from the “hospital” for an emergency appointment (!!!) as usual.
    I checked out the natinal Irish RA organisations website – useless.
    At last I don’t feel so alone or isolated. I too am sick of people looking at me as if I’m lazy or have a low pain threshold. F them! As much as I hate RA, there are a few people out there who I hope someday get RA so they can think back to how insensitive they once were.
    Anyways, thanks again for this site.
    Regards

    Reply
  • June 1, 2014 at 12:52 am
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    Thank you for this website. I am newly diagnosed and trying to grasp what all this means.

    However, I just shared with my hairdresser. She laughed and said, “Oh, we all have aches and pains. Don’t we all get arthritis when we get older?”
    I said, “NO. This disease actually causes my immune system to attack healthy tissue. It can involve my heart, my lungs and even my eyesight and it may get much worse, so …NO.”

    If I get a dismissive reaction from any old friends (and I don’t expect one; I have great friends), I already know what I will say: “You’ve known me for years. Do you think I’ve suddenly decided to feel sorry for myself?” (fixed stare)

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  • October 13, 2014 at 9:36 am
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    I was diagnosed my senior year in high school ( I was 17) and lost several friends. These girls had been my friends since elementary school, helping me cope with a dysfunctional home life and being there for me emotionally. I suppose its the very visible nature of any physical disability ( even if you don’t have deformations that are visible) the disease is made visible by what you can’t do and HOW you manage to do the stuff you can. I suppose its that obviousness that some people can’t handle. I’m now 40 and am glad to say that beyond those high school friends ( whom have never spoken to me since my diagnosis) I have many true friends and have not experienced that type of rejection again. Part of that may be that everyone else never knew me any other way 😉

    Reply
  • October 13, 2014 at 2:35 pm
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    GREAT ARTICLE Kelly!!! I love your ending thought about compassion, use it or lose it. Fantastic!!! Early on in my diagnosis I lost my best friend. I never understood what happened and why she suddenly abandoned me, and unfortunately I never will. Articles like this help to remind me I’m not alone in this battle. Thanks Kelly.

    Reply
  • August 16, 2016 at 5:52 pm
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    But why RA? If you said ‘Lupus’or ‘Diabetes ‘ you would certainly have felt compassion from your friend. Is it lack of accurate information about the disease? Or are people really that unfeeling, it’s so mystifying among other things!!

    Reply

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