Is That Your Final Answer? …or Replying to Misconceptions | Rheumatoid Arthritis Warrior

Is That Your Final Answer? …or Replying to Misconceptions

A day filled with misconceptions about Rheumatoid Arthritis / Disease

Some have misconceptions about Stop Pain sprays sold as arthritis reliefI wrote this post weeks ago when it had just happened. I imagined responses that to misconceptions about rheumatoid arthritis are usually held back in polite conversation. Am I the only one who does that? What if it were a game show…

It was a day filled with misconceptions about RA, and it really bothered me; but I didn’t figure out why until this morning. I hate being misunderstood and when it’s about RA, it bothers me more because I feel like I’m judged as a failure, a bad mother, an un-giving person, lazy, or dishonest. Just once, it can make me feel like I got kicked in the gut. Yesterday, I had that experience repeatedly.

Katie Beth and I were discussing a brief encounter with a doctor and we started laughing about how great it could be if I could put the truth of all of this into the book called it Is That Your Final Answer? Then we started laughing about how some game show lines fit life with RA. Laughing always helps.

But the day was much longer, and in the evening, I was finally at home in bed with a sheet over my head, in too much emotional pain to write and too much physical pain to do anything else.

Do you ever have these encounters where you know someone completely misunderstands? Do you just let it go unanswered, for whatever reason? I’m trying to come up with answers I could have used that day – unspoken answers to misconceptions?

Vignette 1: Is that your final answer?

Nurse: “My best friend has RA, but she doesn’t take any of these medicines.”

Me: “Does it disable her? That helps people decide. I mean when I went on the drugs, I couldn’t put my arms up at all to -”

Nurse: “She has no choice. She is a single mom. She works and does everything for him in spite of RA because she puts him first. He’s in high school, but she wants him to have everything… (5 minutes more)”

Answer UNSPOKEN: “People with RA really do get to a point when they can’t do some things. We still put our children first. It’s not our choice to have a disability either.”

Vignette 2: You are the weakest link

Doc: “Twenty percent of women with inflammatory arthritis actually have a chronic pain syndrome instead of active disease. It’s just pain, right?”

Me: “No, my joints are also stiff, swollen, grinding, weaken –”

Doc: “But how much do you exercise?”

Me: “Well I do as much as I can, but I can’t do a lot of things now. I used to lift 50lb. bags, but my joints-”

Doc: “How do you sleep?”

Me: “Like a rock.”

Doc: “But you don’t feel rested, right?”

Me: “No, morning is the best time of my day.”

Doc: “Have you tried Tramadol or Cymbalta?”

UNSPOKEN Answer:  “I have a fever every day. I have a fever right now in this cold office for 3½ hours. But you aren’t taking my temperature.  You haven’t ever examined my joints or read my chart. You seem to have a preconceived notion that you’re trying to fit me into. Apparently you can’t fathom this, but I have actually tried to do all of the things I say I can’t do. I didn’t just lie there and say ‘I can’t.’ I found out that I can’t because I tried, and I can’t. Perhaps the reason is that RA can inflame tendons and cause sudden weakness, stiffness, or instability. Whatever the reason is, I’ve gotten letters from hundreds of patients who experience the same things as me. And even if I were the only one, it’s still true.”

Vignette 3: Let’s make a deal!

Identity withheld: “She has RA too. She can put up the tents and sleep on the ground. And still do everything.”

Me: “I don’t know anything about her or if medicine helps her-”

IW: “Her daughter has it too and she’s ok.”

UNSPOKEN answer: “Let’s make a deal. I won’t assume you’re being insensitive if you don’t assume I’m being lazy.”

Deal or No Deal

Seriously, like most people with RA, I’d like someone to offer me a deal. Don’t most of us take whatever’s behind Door Number 3 or Curtain Number 2 (like medicines we’ve never tried before!) because even though it’s unknown, it must be better than what we have? If we wait hours every month at the pharmacy or medical appointments, when they call our name, it feels like an announcer on The Price is Right saying, “Kelly Young, Come on down!” Personally, I’d buy a vowel or a lifeline or anything that could possibly help me figure out this puzzle…

I’m ready to say, “I’ll take ‘SOLUTIONS’ for 1000, Alex

How can someone judge whether I’m truly weak or just lazy from across a room? Or if they know nothing about my life? If I say I’m trying my hardest, how does anyone know that I’m not? Is living life with RA a sentence to living life doubted? I truly hope not, but I’ve been accused on both sides with occasional comments that hint: “Do you expect us to believe you’re really sick and still blog?” to others who insist: “If you were willing to try, you could exercise and feel better.”

I don’t know; I’m just doing my best and assuming the same of everyone else with RA. We really need someone to give us the benefit of the doubt.

How about you? Any UNSPOKEN ANSWERS to misconceptions?

Stopain spray in the image

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/

98 thoughts on “Is That Your Final Answer? …or Replying to Misconceptions

  • November 30, 2015 at 7:26 pm
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    Hi Kelly, it is so great to have you back on your blog. I know the original post is an older one but I couldn’t help but chuckle to myself and then try not to cry. I’ve had those same experiences, even with doctors. I have also had people who say they have RA and ones that have inflammatory arthritis try to tell me they understand. I’m sorry – but they don’t understand. They don’t even try. I get so flustered sometimes and that makes it even worse. The pain, but the ‘inside’ feelings, being too tired to even want to try and get up out of a chair, wanting to do things I use to be able to do, having a half way decent day and then doing way too much. Paying for it for the next several days, staying in bed. When my Vectra score is so elevated, my sed rate is way up, my C-reactive protein is way up and on and on. There is so much involved in the body and like you, I’m not a lazy person and if I could, I would!!! Sending love and gentle hugs.

    Reply
  • November 30, 2015 at 8:30 pm
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    Right on! And ogf course they are right in …you live this disease. Thanks for saying it so well for me.

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  • November 30, 2015 at 8:59 pm
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    My admonation to this is that there is a lot of misunderstanding about what RA really is, and how the effects react differently in different people.

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  • November 30, 2015 at 10:09 pm
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    Had an experience about a month ago at a very large WM. There was a lady to my right blocking my path. As I started to go around to the left there was a woman with 2 kids who kept coming toward me. I stopped in my tracks as she proceeded forward. I told her I was sorry, but I had RA and could not back up and was having difficulty even going forward. The lady to my right heard me and immediately moved her cart out of the way. As the woman came forward barely gving me time to move over, I told her thank you for your understanding! Her reply in front of her kids was “oh, shut-up!” Wow! Never had that happen before!! On another note,many meds have not worked for me. I told my RA doc I felt MTX might not be doing well, so was telling my doc maybe I should quit it. I was told to increase my Fish Oil. In a couple of months when I saw my regular PC doc and told him, he immediately ordered a SED rate test. Normal, I think is 29 and mine was 64. He asked me about going back on MTX, and since I needed something I went back to it. I am also on Forteo to repair bone damage caused by the Pred. & MTX. Something must be working since this last month I have felt stronger, but still tire easily and of course have pain,just not as bad as it was.

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  • December 1, 2015 at 7:43 am
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    Hi Kelly — thank you for sharing as I have encountered the same kinds of comments and attitudes. Please know that your website and everything you’ve accomplished have helped me tremendously. I often refer people who are newly diagnosed to your site. As for those, including doctors, who don’t get it — par for the course. There will always be judgmental, doubting and ignorant people — they are our opportunity to share what we know to be true. Frustrating, yes, but that won’t stop us from fighting the good fight. We are warriors.

    Reply
  • December 1, 2015 at 10:41 am
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    I am on…”lazy mode” for my family, my mum especially…you always have been tired, you always refused to do this and to do that and you need to go out more is the best.I am not moving properly because I do NOT exercise enough for some of my friends, and there’s no point to tell them….look I do not do it because I really can’t..answer is always..if you start doing it you will then been able to. The best one is however the comparison…your aunt was able to do EVERYTHING…EVERYTHING…aunt that got visited once every 352 days per year….she even put make up on!!!
    ALL of this really puts me in a dark place…as it seems that it doesn’t matter how much I try to explain…I am lazy, I don’t go out enough and I do not exercise enough.

    You are NOT alone!!!

    Reply
  • February 9, 2016 at 1:05 pm
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    Thank you so much for posting this! I can’t tell you how often I’ve come across the same thing, with so many different people, from close family members to medical practitioners. And if I could still think as fast as I could when I was younger, I would have answered with your unspoken answers! But even my brain is slowed down years into this diagnosis. I can’t think of a proper response until the next day or two.

    I’m very lucky to have a primary care doctor who really seems to understand, and what he doesn’t, he takes me at my word. He now manages my pain medications because of problems I have encountered at the pain clinic, where they refused to see me because I was 10 minutes late to an appointment on a day I could barely walk, shaking head to toe from weakness. I’m lucky that my PC doc’s office staff gives me leeway to be a little late on bad days, or to reschedule on short notice and not make me wait for weeks to get back in. It is a wonderful feeling to have at least my primary doctor understand and show me compassion when so few others do.

    The same cannot be said of my Rheumatologist or Endocrinologist. My Rheumy, through his behavior and back-and-forth answers to my problems, has convinced me it’s time to find a different Rheumy. He told me at the beginning of my odyssey with Rheumatoid disease, that I can drop Fibromyalgia from my list of medical ailments, as Fibromyalgia is a pain disorder in muscles and joints where doctors don’t know the cause. We now knew the cause in my case, so I didn’t have Fibromyalgia anymore but had RA. Two years later, when I had gone to see him because of an out of control flare up with new symptoms, after a quick glance at my chart, he shrugged and blamed it on the Fibromyalgia…

    A different occurrence: after MRI scans and X-rays showed lumbar spinal stenosis, Rheumatologist diagnosed me with concurrent spondyloarthritis. I asked him if he would be treating me for this or if I needed to see an orthopedist. He said it was part of my Rheumatism so he would treat me. Months later, I was having a problem with my lower spine that came on suddenly during a rather tough flare. I called his office to find out what I should do. He sent a message through his nurse that I should see my spine specialist, that this wasn’t his department!

    I suppose that part of my comment belongs in complaints about Rheumatologists! But I do agree about everything you’ve written here. So many times, even my sister, the most sympathetic of my (adult) family, has said things to me like, “well, I saw you do this (certain physical action) before, why can’t you do it now?” Then I have to explain to her, again, that some days, my joints behave and other days they don’t. The children and adolescents in my family accept my RA much moreso than the adults.

    It really drives me crazy when family members act surprised or embarassed when I use my cane. “Do you HAVE to use that thing? You are ONLY 44 years old! Why didn’t you need it yesterday?” Luckily, I didn’t need it yesterday (or earlier this morning). But I need it now. Really makes me feel horrible, sad and angry, that they don’t believe me when joints won’t support me or allow me to carry something heavy, or write or type. I hate that they are implying that I am lazy or looking for pity or something. I am just trying to make it through the day. And in order to do so, if I need to lean on a cane, so be it. Sometimes just to satisfy them and not hear the complaints, I’ll push through the pain and stiff or non-working joints to do something requiring physical strength, but then pay for it later with a flare. Over time, I have learned that dealing with family or friends’ confusion is easier than dealing with the flares, so I don’t push beyond my limits as often anymore.

    Keep fighting, RA Warrior! We need you and we need this site!!! I’ve learned more from this site and links than I have from anywhere else. It has helped me to educate my family and friends, as well. We need to keep spreading the word and educating the public about this disorder. Do we really need to have our hands completely mangled in order to satisfy people that we suffer?

    Reply
    • February 9, 2016 at 1:24 pm
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      Thank you Angela for taking time to type up these experiences that are so common. Others will read what you wrote and feel validated. Have a good day.

      Reply
  • February 9, 2016 at 3:57 pm
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    Thanks, Kelly. This is exactly why I wrote out part of my own little story here. Validation. I want to let others know, especially the relatively newly diagnosed, that these are not isolated incidences, that what they may be experiencing from people around them is not unique to their situation at all. If anything, it is the norm!

    We all share in the experience of indifference and ignorance from those around us. Some of us are luckier than others and have better moral support from family and friends, but generally we’re all in the same boat here. And it will continue until we have accomplished full awareness and Rheumatoid Disease is as much of a household name as ALS, Diabetes, Heart Disease, Osteoporosis, or even Erectile Dysfunction with all those commercials! 😛 Unfortunately, most of us are too exhausted most of the time to get out and spread the word or toot our horn! 😉 Along with our learning to cope with the ever-increasing challenges of this disorder, it is practically required that we develop a tougher skin, use these situations when possible as “teachable moments,” and look for the humor within the ignorance whenever we can.

    Kelly, thank you so much for your movement to change the name of our disorder from RA to RD!!! In 2014, I dropped the word Arthritis out of the title when telling new people that I am chronically ill. Now I only say Rheumatism or Rheumatoid Disease. Otherwise, as you had explained at the beginning of the movement, all people hear is the word “arthritis” and assume I mean the osteo- kind. Since then, I have gotten quite different reactions from average people (not in the medical field) than I used to. I don’t hear “I know what you mean…” or “my grandmother has that…” nearly as often as I did before. I’ve even actually had some people ask me what it is (whoa!!!), which gives me the opportunity to teach them about how our immune systems attack our own joint and connective tissues. Some are satisfied with the short answer, but some people ask even more questions, wanting to understand more about it. I find that people in general respond better to the new terminology rather than to the antiquated RA.

    If there is anything more I can do to continue to educate people or help to spread the message, I’m on board! In the meantime, I’ll continue one person at a time. 🙂

    Reply

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