Chronic Rheumatoid Arthritis, Perspective, & the Church | Rheumatoid Arthritis Warrior

Chronic Rheumatoid Arthritis, Perspective, & the Church

On Space Shuttle watch.

Swell opportunities with chronic RA

It was a weekend of dramatic contrasts. There was good, bad, and ugly. There was failure, success, and “I suppose one day we’ll see a reason for that!” However, thanks to Rheumatoid Arthritis, I’m accustomed to rolling with the punches and saying, “Whatever.”

I try not to stop at “whatever.” I know how I’m supposed to finish it: “Whatever is true, whatever is honorable, whatever is right… dwell on these things,” Philippians 4:8. RA can provide plenty of swell opportunities to choose to dwell well.

Highlights first

  • Special cookies safely shipped after five attempts to mail them.
  • Two trips to the grocery store in one morning and I still forgot something.
  • Almost 20 hours to fix a new mini menu on the website which should have taken us less than one. At least the victory was sweet.
  • First time I saw the beach in months.
  • But best of all, I spent a few hours with precious new friends. I felt like God sent them. We were buoyed by plenty of laughter and understanding. It is remarkable how close people can be when they have both chronic RA and the Church to make them sisters.

Not quite as nice: the low point

I left church before it was over. It is hard to sit and hold my four year old. But, I want to be in church and I love hold my son, so I do not complain.

Orencia hasn’t cured my Rheumatoid Arthritis – at least not yet. Every joint is tender and every day, most joints hurt. Any movement or use of joints is painful. But I don’t complain. I’ve been through the process of acceptance and I’m doing all I can to let it be used it for good.

I’ve been successful in the past with a special handshake I developed to protect my hands from painful squeezing during friendly greetings. It always works – but not this time. As I protected my hands at church, my vulnerable wrists were screaming as they were firmly pressed. But I did not complain.

The fourth person to squeeze my hands and wrists asked me why I looked like I was in pain: “Do your hands hurt?” I said, “Yes. Every joint hurts –” She interrupted to let me know that my response was intolerable. First, she rolled her eyes as she said, “Me too!” Then, as she walked off, she loudly implied that Rheumatoid Arthritis is a minor issue compared to her troubles.

I gathered my purse and my toddler and I left. I did not want to cry in public. I went home and spent my day with my daughter fixing that menu. People in the church know I have RA; some of them even read my blog once in a while. Now, that’s a positive to dwell on.

This is no assault on the Church. The Church is made of people, just like the family, the government, and the hospitals… So, it’s not perfect. If it’s a good Church, it doesn’t even claim to be. That’s God’s place.

 Just the other day, a sweet lady I know with RA was telling me about how her church has been bringing several meals a week for her family while she’s been in horrible flare. I’ve experienced that side of the Church at times, too.

Telling it like some people don’t want to hear it

People don’t have to agree with what I write. They don’t have to even read it. However, I am not dodging the truth – I’m telling it like it is. If people want to live with a Disney World version of RA like sugarplums dancing in their heads, they are going to do it without me. An opportunity to look at this on the blog this week: I discuss my comments which ABC News deleted from their website twice.

Related posts:

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/

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54 thoughts on “Chronic Rheumatoid Arthritis, Perspective, & the Church

  • January 25, 2010 at 8:42 am
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    ((((Gentle Hugs))))
    I’m so sorry that happened to you. 🙁

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    • January 25, 2010 at 8:56 am
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      Thank you. Not complaining. Just processing.

      And wondering whether we can bring change. Thought I was doing the right thing, but it backfired I guess.

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  • January 25, 2010 at 9:38 am
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    Kelly, I’m grateful for the time you had with your friend, your daughter, and your little boy. I’m sorry for your troubles–truly sorry.

    It’s good to tell it like it is so everyone can understand.

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    • January 25, 2010 at 10:01 am
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      Christy,

      “Tell it like it is so everyone can understand.” That’s what we talk about doing. But, I was truly shocked by the reaction in church. Maybe I’d convinced myself that wouldn’t happen again. Maybe I was thinking: people will respond fine if we are just straightforward.

      I know you don’t have RA, so is it hard for you to imagine how we can claim to be in so much pain that is invisible? There’s obviously a missing link here – I still remember a few years ago – I have lived with & without this thing. If someone would have tried to tell me back then that it’s this bad, I think I might have doubted them.

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      • January 26, 2010 at 10:29 am
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        I don’t have RA, you’re right. I have watched my grandmother deal with it for 20 some years. I have heard those who claim they have it worse or that they “get it,” and then show in all they say and do that they do not get it. Nobody can understand someone else’s unique circumstances. You are all correct that we all need to offer grace. I’m sad it was not extended to you.

        Your feelings and frustrations are legitimate. I wish everyone could understand the easy way, by being told, but it seems for many the only way we understand is to suffer ourselves in the same manner.

        You are a champion for your cause and to many people. Keep it up! God keep you!

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  • January 25, 2010 at 10:39 am
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    Kelly,
    I am truly sorry that you had to experience this reaction once again! It always amazes me. I believe, you are a lot like me and that through the years we have developed a high tolerance for pain and for you to even have shown an expression of that pain was rare. That’s the part that gets me. If you know me, then you know I don’t openly complain, I accept that this is what it is. But I would appreciate on those times that I do speak out, just some acknowledgement that I am entitled to do so!
    Appreciate greatly what you do. I forwarded the articles to my 25 year old daughter. She has her first Rheumy visit in February.

    Here’s to a better day!

    Amy Fowler

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    • January 25, 2010 at 11:01 am
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      Amy, thank you for your wonderful comments. I know that your great ability to understand what I meant and read between the lines too is a result of our common experience. I especially appreciate it this morning because after the difficult experience yesterday… it was tough to write about it – and then first thing this morning someone kinda scolded me for writing it. :-/

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  • January 25, 2010 at 10:49 am
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    Sorry to hear this happened. Hope she will think twice about it at some point. Interested to hear about your comments being deleted from ABC News.

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  • January 25, 2010 at 10:57 am
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    Church is the place that I like to sit and hold my daughter. She’s 6 and pretty big, but she’s willing and I think it helps keep her quiet. 🙂 But I also don’t hold the hymnal, or bring books to Sunday School because carrying them is too much. Sometimes I realize that as I sit there I am enduring pain more than anything else. This year my daughter has bumped me (not hard) and nearly knocked me over twice while at church….yesterday was a hard one.
    But to not go is to be more isolated.

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    • January 25, 2010 at 11:31 am
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      My wonderful 4 1/2 old is big too. And heavy & strong. There’ve been many times he’s stomped down on a swollen toe or dropped the kneeler on my ankle. I’m so self conscious about not showing any pain that I realized when it hurts really bad, I “suck air.” (Can’t figure out how to spell out that sound. Haha.) People nearby do stare. Sometimes, I hope they aren’t telling me hush. Giving the benefit of the doubt whenever possible.

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      • January 25, 2010 at 11:37 am
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        Yes, I can relate to the “sucking air”! I breath hard to cover sudden pain too! It’s really my pride that would be hurt (probably some of the rest of me too) if I suddenly fell over between the pews!

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  • January 25, 2010 at 10:58 am
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    Kelly- I admire so many things about you, one being that determination to keep fighting. You’re an encouragement to SO MANY! I’m sorry you had that type of reaction. It somehow seems especially difficult coming from a sister in Christ but like you say, the Church is made up of fallible humans. I wanted to cry for you though. I don’t think anyone can understand the pain unless they’ve walked in these shoes. I rejoice in the wonderful parts of your weekend. I get so excited and tickled when I’m able to do something “normal”! Thanks so much for sharing your experience. God bless you and your family!

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  • January 25, 2010 at 11:50 am
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    It is as Julie said that the “Church is made of “fallible human beings”. But rudeness I find to be grossly intolerable in Church! Do I forgive the rude one, of course I do with a lot of prayer and help from the scriptures. I was asked by a new friend at church who is in my church Bible study and a home Bible study I attend, what was wrong with my hands as they were both gloved and braced. I told her I have RA and explained about the handshaking but that my hands and wrist were on fire and my pain was really bad. She was so sweet and understanding explaining her sister has FM so she does “feel” my pain. The majority of my Church are most understanding w/o being “pitying”, which I can’t stand. Of course there was the one woman with Osteoporosis which she thought was way worse than my RA…LOL! But there is always someone. I’m just sorry that she had to make an attempt at stealing your joy of being in the presence of the Lord in HIS House! God’s Blessings my Sister! :rose:

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  • January 25, 2010 at 1:40 pm
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    Kelly, I know this may sound odd, but I often feel sorry for people like her….. What I mean is she is obviously quite insensitive and lacks general kindness. People often with these traits do not have close relations with alot of people. I am sure when people are looking for a form of support, wheather it be a shoulder to cry on or a hand to hold, they do not call on her. These are the moments that best friends are made and bonds of closeness happen. Can you imagine how sad that is. I am so sorry that you had to have this experience with her. It still stings even if they are the ones who fall short. It’s a get what you give world and I am sure she probably has few that have alot of time and compassion for her as she does not give it. You on the other hand give selflessly to people here on the blog everyday! Thank you for that!

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  • January 25, 2010 at 6:39 pm
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    Dear Kelly,

    I am a fairly new reader, having discovered your blog doing RA research after my recent diagnosis. I want to thank you for creating a safe place for people to share their thoughts and experiences surviving this little recognized disease.

    As a 29 year old, people do not consider that you might be in pain, and I have not even really started feeling comfortable communicating to many people how much pain I am really in most days. I am a Kaiser Permanente member in Northern California and one of the things they told me regarding my RA is that, “Your pain is unique”, no one can tell you if something should or should not be painful or judge the validity of your pain.

    So, sorry you had a rough experience in a place where you should be treated tenderly and Thank you for creating this forum.

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    • January 25, 2010 at 8:56 pm
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      Rosy, welcome. Sorry about the recent diagnosis.

      & Thanks for the encouraging words.

      Your words “…to share their thoughts and experiences surviving this little recognized disease” point to a main goal of this site. I hope we can help change the PR for RA.

      Funny how those who don’t have RA still tell me that they don’t see a need for a change in the way this disease is represented. Yet, among those who are struck with RA, it seems unanimous. People constantly ask: “Why is this the unrecognized loser disease? Why does it have such an incorrect name? Why does everyone tell us we aren’t old enough to have a disease that even children get?”

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  • January 25, 2010 at 7:35 pm
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    I do the one armed shoulder hug OR go hide in the bathroom until handshaking time is over!

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    • January 25, 2010 at 8:58 pm
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      The bathroom comment had my family laughing out loud. Wish I could say I haven’t done that… This time, I thought I was being brave by facing it head on.

      Reply
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  • January 25, 2010 at 8:55 pm
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    I have been brewing on this all day…I am sorry about the rude lady. I too suck air when in pain, it’s a normal reaction to pain.

    However, I as an RA person, have a confession to make. I used to be very judgmental about people with chronic conditions. For most of my life I dealt with acute pain, and I guess that at some level my mind would not accept that some people deal with that sort of pain every day with no relief. I still have a hard time accepting it and I am living it. As a case in point, there is a lady at my work with fibromyalgia. I used to think she was lazy, scatterbrained, and that she milked her diagnosis to get her out of things she did not want to do. I was always polite, but this is what I thought. The ironic thing? When I was waiting for diagnosis, she was one of the first people I talked to. However, every time I see her I wonder how she has coped all these years and mentally take back everything negative I thought about her. I told her so, and I apologized for even thinking badly and for what it is worth, I understand now that no one gets it…the pain, the fatigue, the frustration.

    That said, some people make a competition out of suffering not realizing that there is no real qualitative or quantitative to measure against. It is like when you tell people you have RA, and they go “Me too. I’ve got it in my knees…” I have gotten to where I don’t even try to explain anymore. Just know that sites like this make me and others feel less lonely. It may not cure RA, but it can cure some of the feelings of uncertainty. At least I don’t feel like I am trying to sail the ocean in a bathtub anymore.

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    • January 25, 2010 at 9:25 pm
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      Thanks for your well-thought comments, Robin.

      I’m not sure why when I’m alone I do not “suck air” – I cry out loud in pain. I guess I’ve learned that’s socially unacceptable.

      I understand your “confession” & hope it helps someone. I am sure I could not have believed that RA is this bad before I experienced it. I think only my children actually believe 100% that it’s as bad as I say. How could it be this bad? How could it be every single joint? How could that be possible? How could it be day in & day out? & Be so invisible? I guess I’m asking people to have a lot of faith in me.
      On the other hand, I was an almost “normal” person for almost 40 yrs & worked 18 hr days w/out complaint. People who know me know I don’t lie. So, sometimes I think I earned being believed…

      But, I’m not sure it’s possible. So, like you said, that is why it helps so much to connect with others who do know 1st hand.

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  • January 25, 2010 at 10:21 pm
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    Again, my experience with my sister helped me to know the reality of chronic pain before I was faced with it. I think it is sad that in the place where grace should abound, there is often a lack of it! We are Christians because we get that we need grace, why do we so often forget to offer it to others and ourselves? I’d rather live with stiff and hurting joints, than a hard heart. Some days, I must admit, I have both. Your blog helps me to admit and deal with both. Thanks once again for your honesty. And a final question – why is it so hard for so many of us just to say “I can’t shake hands, my hands hurt too much.?

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    • January 29, 2010 at 8:44 am
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      Maybe I’ll try to say that next time, but I have a feeling the reaction will be similar. I thought being polite & honest was the thing to do – we just can’t control others’ reactions.

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      • January 31, 2010 at 11:21 pm
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        You are so right Kelly, we can’t control another’s action.

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  • January 25, 2010 at 10:54 pm
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    I’m so sorry that that happened to you. I visit this blog often although I don’t comment much and it really encourages me.

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  • January 25, 2010 at 11:32 pm
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    People just don’t think before they respond. One of the first women in my church that I confided in was rude and really upset me. She asked how I was doing and I said I was finally diagnosed and using a medication that seemed to be helping. Instead of being pleased for me, she said “I hope it isn’t methotrexate. That ruined the blood vessels to my sister’s heart and she couldn’t have surgery she needed.” You and I know that it was probably the RA that did that more than the meds, but my point is that I was really new at this RA thing and scared of the meds and she said the one thing that would be most hurtful at the time. It is disappointing to get this reaction at church but I am so grateful the Lord understands our pain and comforts us. Thanks for the opportunity to share experiences in such a positive atmosphere. I look forward to each new post and it is a highlight of my day.

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  • January 26, 2010 at 12:42 am
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    Kelly, that person who made the rude comment as she walked away? What on earth could have made her height of pain or unawareness at you having RA being more endeared? People are a funny concept, sometimes unless a person has a common thread like RA- they live with the notion of what it is like to have RA? Before RA came to live with me in my everyday routine, I use to wonder about all the phases I have been through in my life, like when my son was born 2 months premature & came into the world fighting for his life- (people gave me blank stares when I would ask them to please be careful around my newly brought home son) I would say he was in the hospital for 2 months fighting for his life and he was a preemie, no one got IT? Other days and other phases have come, I have questioned people who do not understand, then again I know how much I have researched on my RA, how many questions of the medical community I have asked and how many different rounds of meds I have tried for some true and lasting affects. I have sat on the floor with tears and asked why ME, I have also sat on the floor to mop my floor with a bucket of hot water, scooting around wiping down the floor, thinking ( I like this, dipping my painful hands in the water feels good) the moving of the rag cleaning not so much. But we push on- we live in silence most times with the pain of RA, looking for answers, a relief, we persevere on, explaining more than a dozen times a month to anyone who will listen us, that we are in pain, that we have RA and what it is – just to have them nod or give us a blank stare… that is why I never tell folks when they try to shake hands with me that I have rheumatoid arthritis – rather I tell them I have a compromised immune system and can not offer my hand shake, then just smile and wait….. If a person really is interested or cares, then I tell them why….. And I always have a pack of handy wipes with me, people see me wiping my hands off with a handy wipe, they seldom want to shake hands at church, or after a meeting, etc. Be well Kelly and hopefully one day for all of us as ONE with RA! ! !

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  • January 26, 2010 at 2:42 pm
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    UMMMMMMMMMMMMMMMMMMMMMM KELLY can you please take my email address down, thanks, you have it posted where it should not me, I understand Name and mail required, but it is not suppose to be published Mail (will not be published) (required)

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    • January 26, 2010 at 3:08 pm
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      Viesta, you entered your email in the little box which says, “name.” It took me a few minutes to go figure out what happened. If you like, I can do some editing and put your name there instead. I have never “posted” anyone’s email address. I don’t even look at them. It’s not me “requiring” it, but this is a WordPress blog & that is just how they work.

      Reply
  • January 26, 2010 at 4:39 pm
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    I’m 27 and have been diagnosed for just over a year now and am having my fair share of comments from people who just dont understand RA. I have taken fairly serious allergic reactions to sulphasalazine and gold injections (the latter ending up in hospital!) Apparently I did this so I could get a few extra days off work…….?! I know there are people who skive, but am thinking that having allergic, potentially life threatning reaction is pushing it a tad too far for an extra day off work!!

    I was also having lunch with my friend when an older lady came up behind me and snapped at me not to move my chair as she had arthritis. At her request, I didnt move it and I got a torrent of abuse from her! I said to her that I also had arthritis, the reply I got was ‘no you dont, and if you did it wouldnt be as bad as mine’ and then she stropped off. My friend and I sat there slightly stunned when her daughter came up and kept apologising for how rude her mother had been and hoped it hadnt caused an offence. I left hoping that the mother takes on more of her daughters attitude and realises that having arthritis, any form, is no reason at all to be so so rude!!

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    • January 29, 2010 at 8:52 am
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      First, I’m sorry about that encounter you describe. Unfortunately, my kids & I have had several like that over the last 4 yrs. Some people can only see their own problems & have a curious need to discount everyone else’s.

      Second, I’m surprised about the gold injections within the last year. I thought those were being retired. Methotrexate is so much “safer & more effective” according to all that I read…

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  • January 27, 2010 at 1:33 am
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    Kelly, I’m so sad you had to experience that 🙁 With everything you do to take care of yourself, be a good mother and help others, it’s hard to think how anyone can be so insensitive.

    We do our best to function in society and not be a burden, but suffering from invisible handicaps often means that we get judged as being rude or worse when we break social norms and customs.

    I am grateful that my RA doesn’t show on my face, and that I can hide it with a smile, but in the periods when I’ve been in a wheelchair (because of a fractured spine) people are so much more helpful and understanding even though living with active but mostly invisible RA has been so much more painful and difficult.

    Do we have to wear a sign that says we´re “rheumatically challenged” just because we can’t shake people’s hands or sit down for long periods of time?

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    • January 29, 2010 at 8:58 am
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      “Breaking social norms” – so well put.

      Good point about the wheelchair & which one hurt more. I have a friend with post-polio and she’s recommends a visual reminder such as a neckbrace because she has noticed such a huge difference in the way people treat her disability – even medical professionals.

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  • January 27, 2010 at 1:57 am
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    Kelly, you should become a Jew, we don’t do the hand shaking thing during services, men and women are actually prohibited to touch unless they are family or married! Seriously though I’m not here to convert you but I hope I could at least make you smile! I am so very sad to hear that you had to experience the intolerance and coldheartedness of others. It is even worse that it happened in a place of worship where G-d should resonate within all of us and we should do on to others as we would want them to do on to us.

    It is moments like those that I remember why everything happens for a reason, G-d is always watching. One day these people will learn their lesson and it won’t be a fun lesson to learn.

    It is so very important for everyone to realize that pain is very personal. We each experience it, process it and handle it in a different way. While I would love to say that I feel your pain Kelly, I don’t know if I do. How could I ever know? There is no way for me to walk a mile in your shoes and you a mile in mine. We could compare numbers on the pain scale but that is still subjective. And whomever wrote that stinkin pain scale should be shot because some days a 10 on the pain scale is just getting started… I’m sure we’ve all at some point when telling the 1-10 what our pain is said 20 or maybe I’m the one with the cynical humor? And if the pain scale the smiling person is crying and that means 10 then why doesn’t my pain know that 10 is where it stops? I need the smiling guy falling on the floor doubled over in pain clutching the phone to call 911 somedays 😛 Maybe a topic of an upcoming blog post of why the pain scale only goes 1-10? I understand the reasoning but geez could they change the faces, maybe that would put pain in perspective for others too. Make the smiling 10 pain rating falling over doubled over in pain clutching the phone to call 911 and those people who “feel your pain” or don’t believe you might finally have some sort of understanding of what arthritic pain is like!

    I am so very sorry to hear that you went through this experience over the weekend. I continue to keep you in my thoughts and prayers every single day. Thank you for this amazing blog and safe place to learn and discuss. And thank you for sharing with us a glimpse of your life. Please know you are loved by so many and you have changed so many peoples lives in such a positive way, finding your blog was like finding my answers that I had pleaded with G-d to answer and I thank G-d every day for you.

    Sending gentle hugs your way!!

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  • January 27, 2010 at 12:24 pm
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    The pain scale image made my day! I love it!

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  • February 26, 2010 at 7:54 pm
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    I was diagnosed at 22 with RA, and had both knees replaced when I was 26 due to the rapid progression. My rheumy thinks it was actually late onset JRA because of the severity and because I had a few isolated flares as a teen.

    I figured out fairly quickly that saying I had arthritis was an invitation to hear:
    “You’re too young for arthritis”
    “My has that too and was cured by ”
    “Oh that’s terrible! I knew someone else who had it and suffered tremendously!” (thanks, I appreciate that you understand, but not encouraging)
    … and other similar comments that inevitably required lengthy discussions and RA education when all I wanted to do was escape.

    So, I usually tell strangers, “I have joint problems” and let them figure it out.

    Shaking hands is a dilemma for me too. It’s been better actually since my wrists autofused into one massive bony mass, but some people really pump their handshakes! I do try the hug method often.

    The pain scale really irritates me sometimes. What’s my pain right this minute vs what’s the average pain I’ve had today? How high, and for how long? What about a fatigue scale? I do know researchers are working on finding better ways to report pain, thankfully, but boy oh boy do I hate the standard form at the doctor’s office.

    Thanks so much for this blog and all the articles. It’s really nice to not be alone in this.

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      • September 21, 2012 at 10:38 pm
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        I think to avoid the planting of the “arthritis” idea in someones head who already believes they know about arthritis you can say ” I have a “musculoskeletal disease” works pretty well. Also using the word disease is helpful in painting the picture of an illness that exists daily and is not like the offhand comment “my back hurts, I must have arthritis”

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        • September 28, 2012 at 9:09 am
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          Yes.
          I”m not sure if you’ve read how we’re working to change the name to Rheumatoid Disease /s.

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  • June 28, 2010 at 12:10 pm
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    Dear Kelly –

    I never really know what to say on blogs like this. I’ve had RA for 13 years but I’m only 24. And I’ve never looked at anything to do with the condition online until a week or two ago. The information is appalling! I used to think maybe I was just unlucky or too shy to explain myself properly – but even honest and articulate You has moments like this… its not my misfortune anymore but OURS – the whole of RA patients. I don’t know what to do with the anger this causes me… but I hope for brighter days for you. And US.

    (And apparently I’m 6 months or so late for the party but after some thought, I’m going to post this anyway because silence only makes days like you described above worse.) <3

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    • June 28, 2010 at 1:11 pm
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      Hi Rachel :heart:
      I’m so glad you tried to figure out what to say! The appalling information situation you mention is what makes me do this website. 😀 Thanks for calling me honest and articulate – of course I think it’s my fault when no one gets it… we will have brighter days. :rainbow:

      Oh, and that anger? I wrote about that last week here if you didn’t see.

      And you are never late to the party here! People read the posts for many months – – just like you did!

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  • July 4, 2010 at 10:10 am
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    Hi,
    I have often wondered, for those of you in a lot of pain, are you taking Prednisone? The Pred keeps my pain levels down but when I try to get off it I’m miserable. The weight gain & irritability are hard to live with too though from the Pred. I’m curious to know what other people do, take the pain or the Prednisone?

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    • July 4, 2010 at 10:37 am
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      That is my dilemna too Kathy. I take the pain. But it’s a very tough choice & I think about taking pred every day. I worked hard in my life to get where I am emotionally / spiritually. I hate the idea becoming irritable. Very hard dilemma.

      Most literature discusses prednisone as a bridge / temporary medicine only. For flares. What if RA doesn’t flare, but just stays bad all the time? Then you take it forever? I know many who do.

      Doesn’t this make us realize that the disease treatments are not as good as they say since most live on prednisone (and also pain meds and anti-depressants)? Or else suffer & bite the bullet like this. My eyes have been opened to this by readers of the blog. It’s not talked about a lot in journals.

      Reply
  • July 16, 2010 at 11:01 pm
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    Wow Kelly…You have touched on so many issues that I too have had those moments where I think “Is it just me???” Thanks for your honesty and gift for making us not feel alone.

    I recently had my fingers on my right hand operated on for the third time and forgot about the handshaking thing– until Church!!! I had the bandages on still and held out my left hand during our shaking time, when a man reached over and took my right hand, squeezed and asked if I knew what the proper way to shake is?? It didn’t even phase him when I did the “suck in air” with a “HELLO–THAT hurts!”look. So I said a few extra prayers that day for Grace to deal with these ignorant people, for Humility to not let them get to me and for the strength to continue to sit there with a happy face.

    There is also so much to say about RA being an “invisible disease”…I learned this first hand when I was diagnosed with Cancer. Truly there was nothing physically different, and I actually felt better than before (thanx to high doses of prednisone & Rituxan), but surprisingly I had more “red carpets” rolled out for me than ever before. People seem uncomfortable around me when I have a flare up and usually avoid me, but when they found out I had cancer, they were willing to do almost anything for me. It makes me sad society can react so differently to diseases based on stereotypes or misconceptions. Why do we need to attach a form of disfiguration or mortality to get the respect we deserve? Don’t get me wrong, I don’t want people to feel sorry for me or patronize me, but some consideration for my feelings and pain would be nice at times…especially in the Lord’s House.

    Thanks again for all you are doing to help with RA awareness and the camaraderie! =)

    Reply
    • July 18, 2010 at 10:00 pm
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      Nancy, you alos touched on so many issues, I’m not sure how to respond. I think I could do it pretty easily if it was an occasional problem. But my hands always hurt now and I have been trying to explain this for 4 1/2 yrs. RA has brought disability overnight and there have not been any of those “red carpets” or cassaroles in my direction. I think it would be easier if I could just stay home when there are flares and manage in between. But this RA has been in unrelenting flare this whole period, a little worse each day – and the “invisible disease” part has left most of them scratching their heads, thinking it’s not real.

      Reply
  • October 10, 2011 at 10:54 pm
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    I too have struggled with my church. A lady who I thought knew my situation called me and asked me to deliver a meal to someone in our church. In 11 years my church has never brought my family a meal. In those years my Dad died of cancer and I was in intensive care for 5 days and they never brought my famiy a meal. I was pretty upfront. I said, yes I can because I deal with illness all of the time and keep meals for my family in the deep freeze ready to go since noone delivers us a meal. It just hurts when your church lets you down.

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    • October 10, 2011 at 11:25 pm
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      I’m sorry Andrea. That is not the way it’s “supposed to be.” Of course, the church is just people… and many people don’t understand RA or anything outside of their own experience. It’s not how the church is called to be, but it’s common. I hope the lady will think about it what you said.

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  • March 10, 2012 at 3:40 pm
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    I have seen both sides of the church too and definitely didn’t take this as an attack on the church or even “Christians” per se. We are all people, and I am so thankful for your words, they have been an inspiration and a lifeline since my dx just over a year ago.

    Thank you.

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  • July 30, 2012 at 6:41 am
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    Amen good Sista! Keep telling it like it is! I too do not white wash this disease….people don’t want to hear it but they hear it from me….in this way maybe, just maybe, attitudes about what this disease and what it is really like to live with it will change…maybe not in my lifetime….i too have had comments from church people…that have unfortunately made me stop going to church….I have had comments that if I prayed harder I would somehow be healed…that I must have done something wrong….and I think…what part of the Book of Job…have they not read? I know that no human is perfect and no church is perfect…but sometimes I have to pray to God to be protected from his own flock…so for now I have to stay away from church…but NOT God…Psalm 46:1 ” God is our refuge and strength, a very present help in trouble “. 

    Reply
  • September 21, 2012 at 10:26 pm
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    Wow. I read with a lot of interest. I have just been diagnosed with RA, positive lab work, +RF and +CCP. I have no joint “problems”. Yet. I have however had multiple hospitalizations, chronic pain (muscle) severe, intractable edema, shortness of breath, fatigue (should that be in all caps?!!), and much more. Now they say Rheumatoid myopathy…..so rare, that can not tell me what comes next even what comes next maybe. Plan to treat with high dose steroids and Methotrexate. I feel like I am in a foreign land. Thanks for your blog.

    Reply
    • September 28, 2012 at 9:11 am
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      Let me know how you’re doing Jan – that sounds hard to deal with – I hope that meds will keep it from getting worse & creating a lot of painful joint symptoms as well!

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  • November 5, 2013 at 11:26 pm
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    I’m so sorry you’ve experienced this. To be honest, this is why I attend my church online service. I’m blessed that my church offers this, but I know I miss out on being around others, but it’s just easier to watch from bed on my laptop. However, I always cringe when I hear my pastor tell us to pray for God to cure us and God will heal whatever ails us. I know that God can cure and heal, but just because he doesn’t, doesn’t mean any less of us. I think they forget to mention that fact. Like, we’re not praying enough or hard enough? Hopefully that person who said that about your RA, realizes that it was rude and apologizes. Thank you for your blog!

    Reply
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