Do You Love a Rheumatoid Arthritis Patient? | Rheumatoid Arthritis Warrior

Do You Love a Rheumatoid Arthritis Patient?

Frozen orange tree with iciclesDear friend of a Rheumatoid Arthritis patient:

Last year when I wrote my first memo to Non-RA’ers, I tried to explain in simple words what it is like to be a Rheumatoid Arthritis Patient (RA’er). I thought that if I explained Rheumatoid Arthritis in terms of injuries and illnesses that are familiar, it would be easier for you to understand what it’s like for the RA patient you love.

Really, I was trying to help you understand what your RA patient needs you to know.  It might make a difference in your expectations if you can imagine for just a moment what an RA patient experiences. The kind of pain and weakness that hinders your performance once in a while due to a sprained knee or kidney infection limits RA patients every day.

Can you relate to this? When you’ve just had shoulder surgery, you don’t expect to be asked to shovel the driveway. If you had a broken leg, you would want people to know not to expect you to join in a bike ride. Most Rheumatoid Arthritis patients live with these kinds of problems in several joints every day. For some, it’s every joint.

There’s not some fuzzy math here either. Don’t believe that the pain is divided evenly since RA patients hurt in more than one place at a time, with each joint hurting just a little. Each single joint or tendon hurts as much as the one joint in the injury example. RA uses multiplication, not division. Actually, RA patients often state that when they have had injuries or surgeries, the pain and disability is much less than that of Rheumatoid Arthritis.

Please learn more about the Rheumatoid Arthritis patient in your life

There are so many other things I wish I could tell you. I’ll close with a request. Please learn before you judge. Every day I read comments from RA’ers who cannot get people in their lives to believe how difficult and painful living with RA is. They are not accommodated.

Is it that they are not articulate enough to explain it? I don’t think that’s it. Maybe people just doubt what they cannot see or feel for themselves? Here is a way you can see much clearer. Spend some time reading comments on this blog or scrolling down its Facebook page. A little while doing this would change the life of the RA’er you and I both care about.

If you want to learn a lot more about RA, start with RA 101 on the top menu tab. Also, this link will take you to every post on this blog which is specially written to explain RA to you who do not have RA. Click on individual titles to see comments or post one.

Note: I grant permission for the reprint of this post if it remains entirely intact and my copyright statement remains attached.

Recommended reading to help you learn more about RA:

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/

24 thoughts on “Do You Love a Rheumatoid Arthritis Patient?

  • February 16, 2010 at 8:31 am
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    Hi, Love ur site. I am starting a support group at our church here in Springfield Illinois. It will be Christian based. I could use some help getting started. I have a couple months to prepare for it. Could u help? I know u r busy and Im totally in awe of u and what u have done!! I am 52 yrs old and have had ( or should I say I have known)RA since 2004/2005.There are very few resources here for RA folks. Only a very few Dr”s here also that can treat it. I also have a friend thats Daughter just found out last yr that she has LUPUS..She is 15 yrs old. If u have any resources on this disease could u please send them to me so I can forward to her. She is having a very HARD time getting Dr”s here that will treat a child with this problem and the one they have found that does is very fickle with his treatment. Telling her one time that she does have it and then telling her she doesn’t!! Thus changing her meds all the time. Even when they r helping her with the pain etc…. She is desperate for help with this. Thanks so very much for ur time. GOD has given u an awesome calling to help others.I also have that calling, just need ur help getting started. Thanks so much…..Cindy Tomlin…If u need it my phone # is xxx-xxx-xxxx (edited out)

    Reply
    • February 16, 2010 at 9:21 am
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      Hi Cindy,

      What wonderful news. I’m working on some materials you could use for that.

      For now, you could use some of the articles on this site for the newly diagnosed (click on the green flower where it says For the Newly Diagnosed on the sidebar). Also, the RA 101 articles on the top menu have a lot of info. You may quote this site as long as I am given credit for my own ideas.

      If you cannot find something specific that you are looking for, you can email me at kelly @ rawarrior.com (without the spaces) and I’ll try to help you find it. Best of luck & blessings on your work. I’d love to hear how it goes.

      Reply
  • February 16, 2010 at 8:42 am
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    Thank You so very much!! My family, while they understand that I hurt, seem to think that since I “seem to be having a good day, week etc” that I will want to, feel like or should/have to cook clean or what ever. It gets so frustrating sometimes. It is so hard to explain that while I might not be as stiff, or in as much pain as I was yesterday/last week I am still stiff and I still hurt. Usually I just go ahead and do whatever it is and suffer in silence just to avoid the “disgusted sighs etc”.

    Reply
    • February 16, 2010 at 9:25 am
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      Sorry about the “disgusted sighs.” :hypnotized:

      Do you think you can get them to read something like this?

      Reply
  • February 16, 2010 at 10:29 am
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    Thank you so very much for this post. I too try really hard to suffer in silence. I don’t want to be known as a downer, and I want to set a good example for my kids. I want them to know that you MUST fight through anything that is thrown your way. I also am not one to ask for help. My husband works in law enforcement, coaches soccer, and has another side job he does occasionally. So I feel that I need to pull my weight at home, which often means a lot of pain for me at the end of a day. I try so hard not to let my family know that I am hurting, but I catch myself saying “I am so tired” a lot! When I say that, it’s usually my muscles, my brain feels like it just wants to shut off and I am just hurting and done for the day! Yet there is still dinner to be prepared or a sporting event to attend! It’s so hard. Prayer gets me through a difficult day. I do not think my family fully understands what I go through. I am not sure they ever will understand. I am on my second biological drug, as the first one just stopped working it’s magic for me. This second one has never seemed to quite get me to where I feel I need to be. Wondering if one day I will run out of hope and new drugs to try. 🙁
    So glad I to have someone who understands, as this is getting harder with each coming year. I just celebrated my 46th birthday this month and am headed to the heart doctor on Friday. I want to be able to really celebrate a birthday, not dread them!! Okay….done whining, I feel better, now im putting on my happy face and going about this beautiful day that I have been gifted!! :-)) God Bless!!

    Reply
    • February 16, 2010 at 9:19 pm
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      Lisa,
      My birthday is this month, too. RA has really changed the way I think about age & birthdays. When my birthday comes, I am so happy that I have made it one more year. Truly grateful for every day here to see my kids grow & love them. :heart:

      Happy Birthday, Lisa :present:

      Reply
  • February 16, 2010 at 11:57 am
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    You truly are a RA Warrior………Thank you for addressing this issue with so much helpful information.

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  • February 16, 2010 at 1:43 pm
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    Thank you so much! I have just discovered your site and truly look forward to going back through all of your posts, and especially to sharing it with my family.

    I’ve had this disease for about 10 years now, with two surgeries behind me (who knows how many more to come!) and have found the internet to be my saving grace. I’m newly venturing into the blogosphere myself and have already “met” some great people. Again, thank you for this site!!

    Reply
  • February 16, 2010 at 9:02 pm
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    Kelly – I have been praying about how to communicate my limitations to those with whom I am intimate. Lately, on bad days, I let friends know I am going AWL (absent with leave) and that I will be in touch when I have more energy. With my kids I am trying to be more open about how I feel without being whiny or angry when they don’t get it, because I want them to know that living in honesty and acceptance is important. My husband wants to understand, I trust him in that, but it is hard for him to hear where I hurt.

    The other night, as we were lying in bed, I did a full body scan – it is a practice I do from a book called Full Catastrophe Living which helps me to connect with where I am hurting – and I felt led to ask him to do it with me. So he lay there and let himself feel his body and told me the results of his scan. His stomach was a bit nervous. That was it! Then, he asked me to tell him the results of my scan.

    Five minutes later (well maybe not but it felt like it) I was through telling him what I felt in my body check in. It was low key, a simple naming and there was total silence from him when I finished. “Is today a bad day?” he asked. “No, about typical for a good day,” I replied. “Thanks for having us do this,” he said. “It helps me to understand how you live.” I think it was a real turning point for us.

    I think reading your blog helped me to have the courage to respond to my leading. Thanks for that!

    Reply
    • February 16, 2010 at 9:39 pm
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      Anj,

      Thanks for sharing that. & What you said about honesty with your kids is important. It’s hard to share information that’s “negative” but we need to be able to be real, too.

      Reply
  • February 18, 2010 at 1:13 am
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    Cindy, I’m in Springfield IL also! You are right, there aren’t many people, especially younger here, with RA nor the resources to be able to get the support we all need sometimes. I’ve been working with the Arthritis Foundation board here so I’d be more than happy to talk to you about it. Great idea!!!

    Reply
  • February 18, 2010 at 9:20 am
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    Cool thats awesome . I had talked to them about the group I was wanting to get up last summer. But I also take care of my 3 yr old Granddaughter 3 days a week and between that and a few FLARES I have had plus illness just didnt get back with them. I know at that time they didnt have anyone here to start or keep up a support group. What I would like to get started is an autoimmune support group. Have Drs and others come in and speak when I can. I know lotsa folks (Children also) that have a variety of different diseases. I have been so slow about getting this started, Im ashamed. But I also know I cannot do this all alone. If you would be interested in helping please let me know. My goal is to get started in a group type setting in a month or so.Please let me know whare u stand on this. Its great that u live in town. I would love to meet with u some time. GOD BLESS….Cindy

    Reply
  • February 20, 2010 at 11:11 pm
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    Cindy, that would be great, I’d love to meet up with you also. feel free to send me an email. If you are on Facebook I’m there also. Don’t stress over it, there’s nothing to be ashamed for. We all know how it goes :). Beckyr2000@aol.com

    Reply
    • February 21, 2010 at 12:30 am
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      Becky, If you decide later after you and Cindy have connected that you want your email deleted from this comment, just let me know. Not sure if it could cause you any spam. 😉

      Reply
  • March 29, 2010 at 4:34 pm
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    I have to say i’m glad i’m stumbled onto your website…. I found it through a facebook group link & i have spent a good portion of my afternoon browsing… Learning what i can about RA… My boyfriend is yet to be diagnosed but we strongly believe he has RA based on his family history (dad & sister diagnosed) & his symptoms of pain in his hands & feet primarily… He’ll wake sometimes in the morning and he can’t get out of bed they hurt so bad~!! He works in a physically demanding job & it’s soo hard to see him hurt but yet haven nothing to do for him~! The blood test came up negative for the factor so we’re hoping to find a dr who will run more tests on him. It scares me that this could be something else but at the same time i truly believe RA is what he’ll ultimately be diagnosed with. I’m on the search now to find out why people get RA. Not knowing much about it still we are afraid our son will suffer the same pain….
    Thank you again for your website…. great information~!!!

    Reply
    • March 29, 2010 at 9:43 pm
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      Melissa, I really hope he gets “good” news that it’s not RA. You are amazing to be doing this research for a loved one’s suffering. O:-)

      Did you find the blood test posts? Use the Tags lists at the top of the page to bring up links to every post on that. Really, there is not one test for RA. Did you see the Do I have RA? on the top menu?

      Reply
  • February 7, 2011 at 1:44 pm
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    I have a handcap sign in front of my house because of days of pain there are fewer stairs in the front of our house than in the back. Our back stairs lead out to our garage where our car is parked out of the weather. On those days of pain (which are so unpredicatble) I have to go out the front door and my husband has the car waiting by the curb. I had a neighbor ask the city to remove the sign because he got a ticket for parking in the handicap parking. He complained that We don’t even park on the street and he wants to have that space. He said she is not handicaped. The city told him that I had all the documents to have that space reserved for the handicap and if he is claiming he is handicap or has some mental problems then he should get the documentation from his Doctor. Most of the people who work for the city know my story and that I have 14 surgeries to date and that I have rupus. They know at a moments notice I can be wiped out. This man was a real stinker and all the neighbors know about him and how he is. I have tried to make friends with him and tell him I have been on 4 different biological infusions and he seems to have a thick head. I pray for him every day that he never has the problems some of the patients have with RA and Lupus. I also have several added bonuses of the problems of RA. Been there done that is all that I can say.

    Reply
  • May 11, 2011 at 10:53 am
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    This is a good start, but it doesn’t go nearly far enough to convince my husband. He is a firm believer in mental toughness, positive attitude, and exercise.He has admitted he doesn’t think I have a disease. I was told by a doctor I have it, just to boost the drug company profits. I should just…, see above. How do you argue with the logic that I should be able to complete my responsibilities, with my pains, since he works(about 25 billable hours per week, we have our own business)with a sore knee, back ache and is tired? All pain is relative to him. We have been married for 25 years. He states that I have always had pain, so what is different now.I can’t seem to explain, and I can’t find a good article to show him. He will not go to a doctor about his pain. I believe he has osteoarthritis, which is painful. So, does anyone have any suggestions?

    Reply
    • May 11, 2011 at 11:03 am
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      Romona, you know him best. Maybe you can go through the other posts like this one (for non patients) and see if one of them would help – then you could email it to him w/ the button below it. But if he’s hardcore against admitting the truth about RA then it will be hard to convince him – maybe the posts on mortality?
      Links: Posts in category for Non-RA’ers
      Posts with the tag of death and RA

      Reply
      • May 11, 2011 at 12:12 pm
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        Thank you for your insight. I’ll keep looking for the “perfect” article. Thank you for this forum. It is definitely lonely out here.

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  • November 10, 2011 at 10:02 pm
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    thank you for writing this article I have ra and oa arthritis and even some of my family members do not believe how much pain I have. they expect me to do things that I just can’t. I feel Sad and at times the pain makes me cry. I will show them this great ,but sad article.thank you May God Bless You!!

    Reply
    • November 11, 2011 at 8:21 am
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      I am sorry they don’t understand Roberto. I hear this often. It can make it even more difficult to have RA when others expect us to do things we can’t. And do not ackowledge the pain they can’t see. I’m glad if the article helped you know that you are not alone experiencing this.

      Reply

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