What “RD” Means to Me

The first time I came across the term “Rheumatoid Disease,” which was in an article from RheumatoidArthritis.net contributor Wren Vandever, I did a double take. “What is Rheumatoid Disease?” I wondered. As there are over 200 different types of arthritis, with osteoarthritis by far the most common (affecting approximately 27 million Americans), and Gout (6.1 million Americans) and Rheumatoid Arthritis (1.3 million Americans) the second and third most prevalent types, I thought perhaps “Rheumatoid Disease” was one of the lesser known forms of arthritis. I also considered that it might be a general term used to refer to all rheumatic diseases. An internet search led me to the understanding that “Rheumatoid Disease” is the preferred term among some activists, such as our talented Wren, who are working to promote greater understanding of Rheumatoid Arthritis.

The term “Rheumatoid Arthritis” is rife with misconceptions. Most people immediately think of osteoarthritis when they hear the word “arthritis,” and assume RA is the same thing. Osteoarthritis is caused by wear and tear to joints, whereas RA is an autoimmune condition. Although both diseases involve pain and inflammation in joints that can be serious enough to require surgery, when it comes to causation and treatment RA actually has more in common with other autoimmune conditions such as Type I Diabetes, Crohn’s Disease, and Multiple Sclerosis. Like those diseases, RA can impact young people, there is no cure, and the symptoms can be life threatening.

I was diagnosed with Rheumatoid Arthritis 15 years ago when I was a 22-year-old senior in college. Since then, I have tried over a dozen medications, and am currently taking four maintenance prescription drugs with an additional three that I take on an as-needed basis. One of my maintenance medications, Orencia, is delivered intraveneously, meaning that I have to be hooked up to an IV every four weeks. Several of these medications are immunosuppressants, making me more susceptible to viral and bacterial infections. The RA symptoms I experience fluctuate, and at times have been so severe that I’ve had to take extended sick leave from work. This disease has had a huge impact on my life, far surpassing what most people would associate with the term “arthritis.”


This is evidenced by the comments I often hear after sharing that I have Rheumatoid Arthritis, such as, “Yeah, I’ve got that in my elbow from playing tennis.” While I never want to minimize anyone else’s discomfort, I don’t think the level of pain I experience throughout my body, the crushing fatigue, the enormous cost of expensive, sophisticated medications, and the potential impacts this degenerative disease might have on my joints, muscles, tendons, and even organs can be compared to a case of tennis elbow.

This is exactly the reason why many proponents of a name change think that “Rheumatoid Disease” more adequately reflects the severity of the condition than “Rheumatoid Arthritis.” While the average person may still not know what “rheumatoid” means (before my own diagnosis I was perplexed at what “rheumatism” was exactly, as it kept striking the older characters in the classic British novels I loved to read), the word “disease” automatically connotes a level of severity that “arthritis” may not. When I hear the word “disease,” I think of a chronic condition that requires treatment and may be very serious. If we replaced “Rheumatoid Arthritis” with “Rheumatoid Disease,” the general public might be thinking along those lines instead of immediately thinking of elderly people or sports injuries.

There are times when RA can be so severe that individuals are required to use wheelchairs or walking aids, or may require joint replacements or other surgeries and procedures, or may be rendered unable to work temporarily or permanently. Even when symptoms are more moderate, those of us with this condition often struggle with chronic pain, inflammation, and fatigue that make getting through a typical day challenging. I think coworkers, supervisors, friends, acquaintances, and family members might have an easier time wrapping their heads around our need to reschedule or cancel plans, use accommodations in the work place, take a seat at events where others are standing, etc. if the term “Rheumatoid Disease” was used in explaining our needs. A switch from “RA” to “RD” could lead to increased awareness and sensitivity to the complex challenges faced by those of us living with this disease.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (18)
  • cathylsmps
    1 year ago

    I have referred to RA as RD. I agree that RD sounds more appropriate term.
    I was diagnosed in January 2014, until then I had never heard of RA. I am still test negative for RA. When the doctor first said. Well your tests results came back negative for RA so that’s good. I was like OK. Not a clue what RA was?
    But after the physical examinations I do have RD. Mind started in the knees. And has since moved to my hip and right shoulder. I have other medical issues so I cant take a lot of the meds for RA.
    I think when someone is first diagnosed with this horrible disease. All the information should be given to them. And a support grpups in the area. In my area there are none.
    The first year of getting the diagnoses I didn’t know anything. All the doctors did was give you meds. But they don’t share anything else. You are left feeling alone in the world.

    I didnt know food was effecting my body. After reading all I could find out about RA on the internet and finding support groups on the internet. I made diet changes and wow what a high difference. Before I couldn’t walk 20 steps without my cane and it took me.5 mins. I am still stiff but now I can walk without my cane. I was in so much pain and fatigue I thought I was dying.
    I think every city should have a local support group and this information should be offered to patients when they are first diagnosed.
    Its a scary road to travel it helps so much to know we are not alone.
    With others who also have RD. There is a family amoung us. No one else understands what we deal with every day.
    We provide support to each other, helpful tips, and a cyber hug.
    Which is so appreciated when you feel alone in the world with RD.

  • Tamara Haag moderator author
    1 year ago

    Hi Cathylsmps,

    Thanks so much for sharing your experience and your thoughts! I agree that the suggestions you’ve made would be huge improvements indeed. I also hope that our website and Facebook page are helpful to those who don’t have a support group in their area, at least in knowing they’re not alone.

    As you mentioned testing negative for RA/RD, I thought I’d share an article I wrote about my own experience with seronegative RA (I also don’t show as testing positive for RA on most tests) and the Vectra test, which does indicate my disease activity: https://rheumatoidarthritis.net/living/testing-testing-1-2-3/

    Plese continue to reach out anytime you feel inclined to share your thoughts. I’m so happy you have found some improvement with diet. I know many of our online community members are interested in what dietary changes works for others, so I welcome you to post to our forum, should you feel so inclined: https://rheumatoidarthritis.net/forum/benefits-of-diet-nutrition/. You can either add to a topic or create a new topic by scrolling all the way to the bottom of the page.

    Wishing you all the best,
    Tamara

  • Richard Faust moderator
    1 year ago

    Thanks for writing cathylsmps. Sometimes with a diagnosis of a condition like RA the emotional aspects take a back seat to the physical, but they are extremely important. This article from our editorial team looks at the emotional, with information for handling, including support groups: https://rheumatoidarthritis.net/living-with-ra/managing-emotional-problems-and-stress/.

    Speaking of support groups, in this article one of our contributors writes about starting a support group as part of an overall finding purpose and full, satisfying life: https://rheumatoidarthritis.net/living/so-what/.

    Know that you are always welcome here for support and information. Thank you for being part of the community. Best, Richard (RheumatoidArthritis.net Team)

  • drama-c-queen
    2 years ago

    I absolutely agree that RA should become RD – but I seriously wonder how much help it will be while my television bombards me with commercials for nasty, dangerous (and extremely expensive) medications that make it appear that a few doses will have you out building playgrounds and playing golf. Yes, I am on a biologic. Actually, I am on my fifth biologic, and in terms of pairing a biologic with a DMARD, I am on something like my 15th treatment regimen. But I still want the commercials to tell the truth – “Hi! we make Enbrel! If you have an immune system disease, our medication may make you feel better. But it might not. And it might give you cancer. Or tuberculosis. Or massively damage your liver. Or kill you. On the other hand, your pain, fatigue and general feeling like crap is probably going to make the potential death seem better than what you are living with.” That’s a commercial I would pay attention to,

  • Tamara Haag moderator author
    2 years ago

    Hi Drama-c-queen, I was laughing reading your “commercial,” because you completely hit the nail on the head, with humor. Truly, that commercial would really resonate with all of us. If you ever feel inclined to share your thoughts through our Stories (they often reach a wider audience than comments on a specific article), I welcome you to do so, as I’m sure many others would love your perspective and humor as much as I do. If you ever feel inclined, you can submit a story here: https://rheumatoidarthritis.net/stories/. Thanks so much for sharing, Tamara

  • enya
    2 years ago

    Every time I read stories like this I feel blessed that I have found an alternative way to control my symptoms and have been staying off immune suppressing drugs for now. I am symptoms free and back to my life in all but my diet that is 99% vegan.

    I remember the first days after the diagnosis when a sense of doom set on, and I was trying to accept the fact that I’ll be on drugs for the rest of my life. And those drugs would do the worst thing possible to a human body – keep its natural defenses (immune system) down. When I found the alternative system, I was skeptical but decided that a month without methotrexate is not going to do me much harm and I can try that wild “tree hugger” diet I found. If it does not work, it does not work. But it did! And I am forever grateful to those who created it and refined it and shared their knowledge about it with me. It’s been only just over a year and a half on this journey for me but so far it’s been great!

    My only wish is o see more information on alternatives through the established channels like this website or RAWorrior and others.

    My best wishes to all who are dealing with this tricky condition!

  • Tamara Haag moderator author
    2 years ago

    Thanks so much for sharing, Enya! That is so wonderful that you have found something that works so well in controlling your RA. It continues to mystify me how the same disease can impact people so differently and respond to different treatments/diets so differently from person to person. I’ve been a vegetarian for 26 years, so when I was diagnosed with RA 17 years ago I tried a vegan diet, and it made no noticeable difference in my symptoms. It is just fascinating (and of course frustrating) how differently our bodies respond to the same interventions.

    Thanks for sharing your experience and perspective, and congratulations on finding what works for you!

    All the best,
    Tamara

  • Fritzkath
    2 years ago

    From now on… I have RD. This is so much better of a description. While we respect all people and their pain, Arthritis and RA are far from the same thing… as we well know. Words do make such a difference and this helps to create awareness calling it RD. Thanks for such great insight

  • sharoncookie57
    1 year ago

    Thank you so much for calling this RD. I only wish everyone else would call it RD to. When I call this RD everyone says what that. With that I am able to get across the real facts about what we suffer with.

  • Tamara Haag moderator author
    2 years ago

    Thanks so much for sharing your thoughts! I’m glad you found the article helpful. Please continue sharing your perspective anytime you feel so inclined, as we’re glad to have you in our online community. All the best, Tamara

  • PammyJune
    2 years ago

    Yes, I can so relate! Having a mixed bag of RA, Sjogren’s, Raynauds & Mixed Connective Tissue Disease but with few visible symptoms, I began just telling people I have Rheumatoid Disease and leaving it at that unless they want to know more. Calling it a disease, which it is, makes it sound more serious, which it most definitely is!!

  • Tamara Haag moderator author
    2 years ago

    Thanks so much for sharing your experience and perspective! I hate that you are contending with multiple diagnoses, and can definitely see why “Rheumatoid Disease” feels more appropriate a description than a list of conditions the majority of people know nothing about. I’m so glad you are in our community, and I hope you’ll continue to share any time you feel so inclined.

  • jrf5460
    3 years ago

    I listen, gently, as the older woman holds my hand and tells me how the arthritis hurts her little finger after asking me how I’m doing with my arthritis. I never get to answer her question as she begans to tell her story first. After she finishes, I pat her hand gently and tell her if I could do anything for her, she just has to ask.

    Typical Sunday morning for me in church. The congregation knows about my struggle with RD. I’m often on prayer lists and often mentioned from the pulpit when hospitalized. My extended family members mention my hospital stays many weeks after discharge with off the cuff comments such as: “I heard you were sick” or, “got you again, huh?” They don’t know is twice in this year alone I was so bad off in the ER, doctors told my relatives to gather the family because I was very, very sick. Doctor talk for they think I’m going to die.

  • Tamara Haag moderator author
    3 years ago

    Thank you for sharing these experiences (and so well-written!). I am so sorry that your RD is so severe and that you are suffering. Wishing you relief, Tamara

  • Philanthartist
    3 years ago

    Yay! Great job of creating awareness about rheumatoid disease. This is the disease that has and is scarring my lungs. Thanks for another super article!

  • Jillian S moderator
    3 years ago

    Philanthartist,
    It is always great to hear from you. We are so glad you enjoyed the article and hope you continue to come by for more information and support.
    I am so sorry to hear about the effects RD has had on your lungs. Remember that you are not alone in this battle.

    I wanted to share a view articles that discuss lung diseases and RD:

    https://rheumatoidarthritis.net/symptoms/lung-diseases-and-conditions/

    https://rheumatoidarthritis.net/living/ra-symptoms-unusual-frustrating/

    We hope you enjoy reading these and look forward to hearing from you soon 🙂

    Warmly,
    Jillian (Rheumatoidarthritis.net Team)

  • Kay
    3 years ago

    Thank you Tamara for this article. I also think it’s time we help people differentiate between the arthritis of old age and injury and the full spectrum of Rheumatoid disease(which I am using from now on). When I explain how mines started in my lungs I get a shocked look and people say, “I had no idea Rheumatoid arthritis could do that! I thought is happened just in your joints!” That’s how misinformed people unfortunately still are. So thank you for your article.

  • Tamara Haag moderator author
    3 years ago

    Thanks for sharing, Kay! Yes, it’s true that there is much more work to do in creating awareness and educating others about this condition. You may also be interested in reading this article about “awareness gaps,” as I speak to the issue of it not just affecting joints: https://rheumatoidarthritis.net/news/awareness-gaps/. I wish you all the best!

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