10 Misconceptions About Chronic Disease Many People Believe

You can’t understand illness by just looking at a person

Very soon after being diagnosed with RA, I learned that most people have beliefs about chronic illness that are hard to overcome. When one neighbor, friend, and family member after another dismissed me, I did the same thing most people with Rheumatoid Disease (PRD) do: I quit talking about it. But even if we mind our own business, sometimes our health becomes a topic of conversation.

Standing in line an airport with a friend a couple years ago, I had my shoes off as usual. Another traveler teasingly chastised me for “claiming” my feet hurt so early in the day. I teased back that he couldn’t tell what’s wrong with a person by looking at her. He looked confused when my friend and I described Rheumatoid Disease, so I quizzed him about which one of us had lymphoma as well (my friend). You just can’t tell many illnesses from looking at a person.

Nutrisystem-Marie-Osmond-take-care-of-yourself

10 things about illness people think without thinking

1)     If you were as sick as you say, I’d be able to tell by looking at you.
2)     You brought this on yourself somehow.
3)     If you were in pain, you could not be smiling (working, exercising…)
4)     There is a simple answer you haven’t tried (cherry juice, Tylenol, exercise…)
5)     Everyone has had the same symptoms as you, but you exaggerate yours.
6)     Your life is still generally normal, and just like everyone else’s.
7)     (Fill-in-the-blank) “cured” So-and-so, so it would cure you too.
8)     You’re using your illness as an excuse to avoid things you don’t want to do.
9)     Your illness is psychosomatic (in your head, hypochondriasis, a spiritual problem…)
10)  If you would take better care of yourself, you’d be fine.

Marie Osmond Nutrisystem commercial

Marie might know better, but she probably just reads whatever script they give her. At 42 seconds in this commercial, Marie says: “Let me tell you something: when you take care of your body, man, it takes care of you.” That’s not necessarily so. Would daily exercise and fresh home-cooked meals help prevent RD? It didn’t help me. But it is a common message of the modern wellness culture that contributes to the difficulty understanding a disease where your body turns on you.

I’m not picking on Nutrisystem, but marketers know what will sell: our health is in our own hands, and you’ll be well if you take care of your body. Add that to the obstacle of understanding invisible symptoms, and you breed many misconceptions like those in the list.

Which ones have you heard? What causes have you noticed in society?

Recommended reading

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

55 thoughts on “10 Misconceptions About Chronic Disease Many People Believe

  • November 8, 2013 at 9:49 am
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    Wonderfully written !!! Thank you for expressing what is on my mind. We that have this disease are generally quiet about it.

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  • November 8, 2013 at 10:25 am
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    Once again, a great topic Kelly! My ex-husband was famous for thinking that if I were sick or not feeling well, it must have been something I did to myself. He always thought I should exercise more and be athletic like him (even though I never was and he knew that when we married). Luckily I didn’t develop RAD until after we were divorced, I can only imagine what a jerk he would have been. When I told him about my illness, his first words were “Well, they say exercise is good for that.”

    Number 3 is a big one! I carry on through every day like nothing is wrong, because I have no choice, but silently in my head I look at people and think “Oh, if only you could spend one day in my shoes….” Today my very energetic boss, who is older than me, bounced past me on the stairs and I thought “If only you knew….if this happened to you, your world would come crashing down like you never thought possible.”

    I have never had anyone say it was all in my head, but I know they have thought it! Then I show them my red, swollen hands, and the collection of pills in my purse, and tell them about my weekly injections, etc…. I know I cannot educate everyone, but I will try to reach those I can, and not just about our illness, but others illnesses as well that other people just don’t think about.

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  • November 8, 2013 at 10:41 am
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    I feel like every one around me is thinking 1-10, lately I find myself sort of withdrawing from people. I dread being asked how I feel. Do I lie , smile and say great? Do I tell them how I actually feel?? NEVER. Sometimes I go to a place by myself and yell, ” do you people not remember the “Me” before this disease???? do you not know that I do and always have eaten right? Do you not know I am no longer normal, and it is not a choice???” frustrated to say the least, today I hate RD

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  • November 8, 2013 at 11:01 am
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    I’ve gotten the “everyone has it” you’re just exaggerating from my sister. It is hurtful. I often don’t let people know how I feel even this week as I have pushed through in spite of how I feel after my meds to make me functional….this isn’t fun in any way shape or form….I would gladly trade my dx and “stay at home” lifestyle for a chance to have my job and my life back. I am better than I was two years ago….but it took two years of resting to get to this point, and if I push too hard, I head back down that other road…..thank you Kelly for sharing this…..You have been a God-send since my diagnosis….

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  • November 8, 2013 at 11:21 am
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    My most dreaded is: wow, you look like you’re feeling better! glad your getting better!… I feel like I am disappointing people when I know it just happened to be a good day, or I have just taken more pain med than usual, just so I could do SOMETHING. that day.
    I also dread the innocently classic question: “How are you.” It causes instant stress. I KNOW nobody wants to hear the actual status, yet if I say: ” fine, and you?” then back to square one & the assumptions of all the above, ie, all in my head, or I finally am healing, or whatever….aaargh!
    More isolation. People, even ” good” friends, get bored coming over & hanging out, when I am rarely up to much more than that…usually on my ” good” days, I have stacks of chores needing done & have to decide if I want to tackle those or go somewhere.

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  • November 8, 2013 at 11:36 am
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    Thank you again Kelly for this post. When you wake up every morning and feel like you have been run over by a train, until you get your meds into your body, it is very daunting to have people not understand. I have a few very close friends who are starting to get it after five years of fighting this disease but basically do not say anything to anyone else other than my family. I have heard it all, the copper bracelets, glucosomine, you look great, you should have your breast implants removed, my sister has that and she took (whatever)….. I just keep my mouth shut and a smile on my face because you and I both know that mere mortals without RD don’t know how very lucky they are.

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  • November 8, 2013 at 11:46 am
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    Today I saw a rheumatologist, representing Arthritis.org on a local news program. She was asked the question “to describe a day for a RA patient”. She said of they are receiving treatment it is normal. My first reaction was I’m being treated and my life isn’t normal. Makes you wonder why there are so many misconceptions out there doesn’t it?

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    • November 8, 2013 at 12:09 pm
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      Amy, email me if you want. I’m curious which doc / which channel.

      Reply
  • November 8, 2013 at 11:53 am
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    Awesome article! On the flip side of “You don’t look sick” is the time when I was in Beauty College and my instructor said to me “Why are you here when you have arthritis?” I said to her… “why not?” When you are in a good place – DO IT. Soon enough RA will put you in a bad place so go for it while you can. And I have gone for as much as my body will allow.

    Healthy people are so funny sometimes! 🙂

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  • November 8, 2013 at 12:13 pm
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    Well, let’s see. People are still trying to sell me nutritional supplements, tell me how to eat, get me to go to the gym. This morning my husband, who should by now know something of the depth of change that has taken place, said, “I’m confused. You say you can’t move but you are moving.” This is while I was opening pill bottles and silently cursing that I keep forgetting to ask for non-childproof bottles. I said, “it feels like I’m breaking my fingers, honey.” He decided to be wise and not say anything else. The “lego hands” thing in the morning really is something that won’t go away. And no, you can’t see it unless you look for it.

    There are some absolute angels that I work with who see the difference. They help with grippy type things if I ask, sometimes they help before I ask, and they don’t ask how I am like it’s a perky thing, expecting a perky answer. They stop, and listen, and really want to know.

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  • November 8, 2013 at 12:24 pm
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    You’ve made me realize that I’m letting all of the advice you see out there get to me. It seems like I have a running commentary in my head telling me that I just need to eat better and work out and things will be OK…geeze!

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    • November 8, 2013 at 12:50 pm
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      Yea Teresa, as if we all wouldn’t do these things if we thought they’d make us better. I wish I had an erase button in my head for when I let it get too full of the advise and guilt hugs to you all

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  • November 8, 2013 at 12:50 pm
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    On a daily basis I struggle with 1-10. Especially when you’re overweight AND have RD. People assume what they see on the outside is all that is *really* wrong. What they don’t know is the chronic pain, the fatigue, the depression that likely stems from chronic pain/fatigue… etc, is not -only- because of a person’s “poor eating habits” or “lack of exercise”. Our wellness culture wants us to take responsibility for our ailments and do something about it. But what a lot of people don’t understand is that there isn’t really anything we can “do” to make the pain/inflammation go away. We spend our lives treating symptoms. Of course there are solutions to our symptoms, but what works for you isn’t likely to work 100% for someone else. Everyone has a solution, yet no one wants to know what the real problem is. Thank you so much for sharing this and thank you a hundred times over for being the voice for a lot of silent sufferers.

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    • November 13, 2013 at 12:25 pm
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      Ryhonna,
      You are so right! I struggle with an extra 20 lbs that I would do nearly anything to get rid of. If I push too hard, do something crazy with my diet, or starve myself, my RD flares. That puts me flat on my butt & usually taking Steroids which makes the weight worse. I work out as often as I can, but if I hear one more person suggest I “just run” to get my weight down, I’ll scream. BTW, I have Celiac too, so I already “quit eating gluten.” Sheesh….

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  • November 8, 2013 at 1:14 pm
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    Funny, I eat a mostly, organic, vegetarian, anti-inflammatory diet. Drink Cherry juice, green tea, Take Curcumin etc. I have been through 7 medications with no success. I gain and loose weight on a daily basis (up 5 lbs over night the other day). I eat healthier than the people I work with and yet can’t steadily loose weight. People ask “How are you” Still here, hanging tough,etc. are my answers. My true friends tolerate me wanting to sit more often or walk a little slower, or needing naps when I can get them. The worst for me is the Chronic fatigue. I am a 911 dispatcher and it can be hard to sit for long periods of time typing. People wonder why I need to get up and wander around or shake my hands. If only they lived a day in this body. But to others I am smiling, joking, happy Michelle. This is one of the only places I can say what is really going on.

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  • November 8, 2013 at 1:42 pm
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    This happens all the time Kelly! Even my husband! It just happened when I sat down with insurance person. She seen I had it and told me her and her husband have RD.she said you don’t look like it. I get tired of explaining someone I didn’t. I wrote down ur site and told here to go here for a wealth of knowledge. Said you would be interested to hear from her husband cause it affects mostly woman. Of course she didn’t know that either. She was just diagnosed. What are the chances that husband and wife both have RD? In the water? But me and my mother in law both do. Wanted to thank you for the cards brochures etc.. On the foundation. Very helpful. Can I make copies or order more?

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  • November 8, 2013 at 4:39 pm
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    I really appreciated reading this post, RA Warrior. I have RA too, and I’ve been told everything on this list. The assumption in #8 hurts me the most, but #4 is the one I hear the most frequently. Here are some of the things I’ve heard: “You need to cut out gluten,” “Eat more cherries and nuts,” “Eat only organic,” “Medicines are awful for your body, and it sounds like your medicines are causing your problems. You should try to get off of those and see if it helps.” 😀

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  • November 8, 2013 at 6:29 pm
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    Thank you so much for all of your research and fighting for this disease. I often look to your website for insight and tips to live with this disease. I was diagnosed almost a year ago and boy is it overwhelming! I pray that God will continue to strengthen you to fight!

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  • November 8, 2013 at 6:32 pm
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    2, 8, & 10 are attitudes I get from my own husband all the time. He doesn’t get why making a bed or scrubbing a bathtub is so hard for me. I am having severe back pain as well as all four limbs and their extremities. He thinks if I lose weight, I would feel better. That may be true, but it won’t cure me. Frustrating!

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    • January 22, 2019 at 3:52 pm
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      i had the gastric sleeve and lost 97 pounds and it hasn’t changed my RD a bit. I still have pain every day and flares and swelling and fatigue. So…

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  • November 8, 2013 at 7:04 pm
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    One irony is that old age minimizes this aggravation. My wife has had a chronic illness for many years. When she was younger, and she would park her car in a handicapped slot, using the appropriate placard or a handicapped plate, onlookers would sometimes criticize her for stealing a space that a “real” handicaqpped person needed.

    Now that she is older, the “wellness appearance police” don’t give her such a hard time.

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    • November 13, 2013 at 5:43 pm
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      I hear you loud and clear on that one. I was 21 when I first got my HC parking permit and I got all manner of grief, even from friends and family who should have known better. Now that I’m 47, I don’t see it nearly as much.

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    • November 13, 2013 at 5:49 pm
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      So very true. I get no end of advice from people claiming their latest pet diet will cure me. Or their favorite aunt/uncle/grandparent uses XXX and it cured them. I will always remember the lady in the elevator who told me I have RD because I “internalize my emotions.”

      Sure, eating right and exercising can help prevent illness. You can do things to keep yourself healthier, but RD has no cure and those things don’t have as much impact on it as the treatments we take (for most of us). Some people get good results from particular diets, supplements, or exercises, but we’re all different and those things may not help everyone.

      I think the most annoying thing is the self-righteous attitude some people take on that ends up putting the blame on us for our own conditions. Most of us are willing to do whatever it takes to feel better and blaming the victim doesn’t serve anyone.

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  • November 8, 2013 at 7:53 pm
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    Honestly, I sometimes think some of these things about MYSELF. It’s really hard to wrap your head around this disease, even when you have it. Before I got sick I was a Flight Attendant. I absolutely LOVED my job. It was more than just a job – it was my passion. Now I will probably never fly again. And while that’s easy for me to say, it’s definitely NOT what I feel in my heart. I don’t want to believe it. Yesterday was a very bittersweet day for me. I know I should be happy, and I don’t totally understand why I’m not – but – yesterday I received notification that I have been granted Disability. No fight. No “try again”. No appeals. I was granted on the first try. I didn’t even have to go see THEIR doctors – they cancelled that appointment after receiving and reviewing my medical records. I guess I really AM sick. And like I said, I guess I should be very happy. But it’s almost like – that’s “it”. They just labeled me disabled. As much as I wanted to hope and pray and believe that one day I may wake up and feel great and be able to go back to work – it’s over. I am now on Disability. And even _I_ don’t really believe that I qualified for it…I don’t know why “they” did. But they did. And it’s over. And I should be happy. What the heck is wrong with me?

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    • November 8, 2013 at 7:54 pm
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      I DON’T LOOK SICK.

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  • November 8, 2013 at 8:52 pm
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    I get these much of the time, too; the worst is from my daughter who is not afraid to tell me how exercise is supposed to help and/or I should eat better (even though I try to stay away from inflammatory food but am on disability and a fixed income and food choice has to suffer much of the time depending on my bills). I get that she probably doesn’t want to be seeing me this way, but I want understanding. I can do nothing that I used to do(6 miles walking a day to keep my weight off-ANY thing on my knees because my OA is also worse, and the incredible fatigue with my RA which makes me ready for bed at 4 pm) so all of my friends have moved on. I have become completely isolated because it’s just easier than trying to make the world understand, or try to keep up but fail-but in the aftermath have developed even more depression about my future and about the difficulty keeping up with my little grandkids who I feel are the only people who don’t know anything about this and have no judgment. The lack of support and esp in my area where there are no groups or anything is even more discouraging. So I just stay home (I have no significant other and believe it is hopeless to saddle someone with me like this) and don’t talk about myself to anyone except doctors, who also aren’t much help because I have regular liver issues which prevent an aggressive approach for treatment. Finally, I’m discouraged over the arthritis magazines and publications which always seem to indicate that RA isn’t as invasive as I find it-people are active with great attitudes that I can’t seem to muster. Even though this site is helpful in knowing that I’m not alone in how I feel, their is still no one to actually spend meaningful time with who can relate, or at least I can feel comfortable understands, and that is what makes me feel the worst.

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    • January 23, 2014 at 3:26 pm
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      I can relate. No more hunting deer,no more fishing,no more cutting wood. I just walk our dog,sweet pug.

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  • November 8, 2013 at 10:06 pm
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    Just yesterday – I was listening to a friend talk about preparing for a half-marathon next year. She and a group are walking. I told her a year after I was diagnosed I did a 5k walk. As a (former) athlete I needed to try. The adrenalin got me through the race but after the race my legs were aching in pain and I could barely walk. She replied “well, everyone needs to stretch after walking.” Yep – guess that was my mistake. 😉

    This disease – so misunderstood.

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  • November 8, 2013 at 10:29 pm
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    There is a hymn, written by Annie Johnson Flint in the late 1800s, that has recently become very important to me. I am only now trying and having to learn how to budget my strength and capabilities. Performing certain tasks at work can leave me sort of crippled in that activity for a few days, which is new for me. I have to consider how I use my energy, how I’ll get through the day. And I run out of energy before I thought I would. The lyrics are thus:

    He giveth more grace when the burdens grow greater,
    He sendeth more strength when the labors increase,
    To added affliction He addeth His mercy,
    To multiplied trials, His multiplied peace.

    His love has no limit, His grace has no measure,
    His power no boundary known unto men,
    For out of His infinite riches in Jesus,
    He giveth and giveth and giveth again.

    When we have exhausted our store of endurance,
    When our strength has failed ere the day is half-done,
    When we reach the end of our hoarded resources,
    Our Father’s full giving is only begun.

    It’s that last verse about running out of strength halfway through the day. Or reaching the end of the resources we guard and hoard so carefully. Annie Johnson Flint had RA. She had it worse than I, and back when there was essentially no treatment for the disease. So she understood these things, which makes the truth in the song all the more powerful. Thought you’d find that comforting.

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  • November 8, 2013 at 10:30 pm
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    I have lived with a rare form of Adult Onset Still’s Disease since age 19. It is also known as Adult Onset Systemic Onset Juvenile Idiopathic Arthritis. It is an autoimmune rheumatic disease that affects not only the joints but the organs and tissues as well.

    I am an advocate for awareness and understanding of chronic illness and pain and thank you for sharing this article.
    I am also president of the International Stills Disease Foundation, Inc. and would like to publish your information at our web site.

    Thank you for the work you do.
    Best regards.

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  • November 9, 2013 at 8:41 am
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    Have read the above comments , often with tears filling my eyes. At 63 I have become very reluctant to discuss my RA with anyone.. As I age, I get fewer of the “you look wonderfull” comments but I still get them. I ffinally decided that I think I prefer it to “gee you look awful”.

    I so appreciate what you are doing for us all & what a personal struggle that is for you. We need advocates like you who truly understand the agony of the disease and the issues with diagnosis, treatment and research. Thanks Kelly for all that you do. 🙂

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  • November 9, 2013 at 11:28 am
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    Oh, my…so glad I read this today! I really needed it. I have experienced all (1-10) too. It is not just being the object of these misconceptions, but the guilt that is associated with it as well…wondering… AM I doing enough…have I made the right choices?…second guessing myself because of other’s comments, beliefs, and reactions.

    I am 45 and was diagnosed 12 years ago, just after my son was born. I have been through a very long list of meds…including three studies. While I had some relief from one medication…it did not last long. I have never had a remission, even while pregnant. The side effects from the meds ranged from hair loss to migraines and nausea, fatigue, and mood swings. Three years ago I ended up in the hospital with a severe kidney infection that turned into sepsis. A perfect storm so to speak when you combine immunosuppressant drugs with steroids. After six weeks of illness, I decided then, that the side effects from these medications was no longer worth it. So, I made the decision to stop them. My RA has not changed…still progressing as always, even while on meds. I have always been one to take good care of myself. When someone asks how I am doing, I usually reply with “fine,” simply because I know from experience no one wants to REALLY hear how I am doing. If discussion about my disease does develop, many will quickly “check out” of the conversation. I even witnessed eye rolls from an in-law. Or, I get advice as if I am not taking care of myself or doing enough…usually with an example such as “my cousin has…” or “I saw on TV….” etc. I tolerate these comments, knowing that they think they are helping….but walk away frustrated and doubting myself. Chronic disease, like RA really wreak havoc with one’s self image!

    I will share your post, but wonder how many will actually read it. And for those who do, will they be able to recognize some of their own misconceptions? I hope so! This week has been a tough one. I rarely complain, but needed to today…so thanks for giving me the forum to do so!

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  • November 9, 2013 at 9:05 pm
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    You nailed it, Kelly, as usual! I was diagnosed with ADHD this year too – lol – and here’s what I’ve heard in response to both diagnoses –

    Everyone has aches and pains.
    Everyone is tired.
    Everyone gets distracted.

    Yeah, I’m menopausal – because I’m 47. I should be vegan or avoid dairy or avoid wheat – like I have a bad diet. I should exercise more – even though my BMI is 22 and I’m fit. It’s a spiritual issue – because I don’t go to church activities as much. I should have a normal 9-5 job – even though self employment works much better flexibility wise and I’m successful…

    Whatever!!!

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  • November 10, 2013 at 12:48 pm
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    One of the most difficult aspects of RD is the feeling that our bodies have betrayed us. With this difficult disease, it seems to not matter how well we eat, how much we exercise (or try to), how much rest we get, etc. The pain continues, the damage to many parts of our bodies marches on, the swelling increases, the fatigue unbearable at times…
    Oh that it were so easy: “Take care of your body and it will take care of you!” Or the RD medication commercials: “keep on moving, blah, blah, blah!”
    Truthfully, I fight the temptation to throw something at the TV or scream when I see all these lies! “Just take this shot and you’ll be all better” Never mind the list of side effects that always ends with “death!”
    I am so grateful for you, Kelly, and all those who work tirelessly on behalf of those of us with RD!
    Thank you again and again!
    Connie

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  • November 11, 2013 at 6:05 am
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    I find it odd that while I’m reading this there is an ad for green lipped mussell extract ‘seize the day and stay flexible’, and ‘the latest news on systemic enzymes – inflammation and natural alternatives’…

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    • November 11, 2013 at 7:15 am
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      Dear Jo, that ad was chosen specifically for you by Google, based on what you’ve been reading with that browser. I don’t see that ad, but the shoes I was shopping for, and the nutrisystem ad I watched to write a recent blog about Marie Osmond’s quote.

      Reply
  • November 19, 2013 at 4:11 pm
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    I’m at the point where I stopped talking about it. My parents and sister completely understand that I cannot be at all functions/appts. When my Dad was recently diagnosed with Lymphoma, I no longer felt comfy talking about my own pains and fatigue, not even with my husband and college kids. One thing at a time, I figure. This site always comforts me.

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  • November 19, 2013 at 4:20 pm
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    LMAO! I feel the same way when I see these types of commercials. I usually yell “Bullshit”! at the screen!

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  • November 19, 2013 at 8:27 pm
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    I am a competitive powerlifter. I am a world record holder in the bench press for my division(woman age 45-49, super heavy weight). I benched 209lbs at my last meet and guess what I am still sick. I can’t walk very far or stand for very long. I just had tendon release surgery in my hand and in two days am going in for my 5th sinus surgery in 9 years. I’ve had sinusitis now for a couple of weeks, had a tonsil infection before that and the hand surgery a month ago. I am not healthy.

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  • November 19, 2013 at 9:52 pm
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    Hi…
    I am a proof that “Let me tell you something: when you take care of your body, man, it takes care of you.” is so not true. I had been on a 1 year journey of weight loss and healthy eating. I had lost 51 pounds, was walking 6 miles 3x’s a week, 4 miles a day the other 4, weight lifting and elliptical (I was exercising 7 days a week). I was feeling great, looking good then in March of 2013 it hit me, it started in my knee and went to my ankle and by June I was unable to clap at my son’s high school graduation. The entire month I could hardly move. My husband had to dress me. I was in so much pain. I am on my knees thanking God that I am doing well now (thanks to the plethora of meds I am on) and I am back to exercising… I do believe you do what your body allows you to do. If you can’t then you can’t and if people don’t believe you, then that is their problem not yours. People just have no idea of how bad RA is and how much worse it is when you have a flare up. My friends that saw me at my worse, know. They saw that I lost 6 pounds in June, they were there to close car doors for me…they know…my family and my friends are the ones I want to understand…they are the ones that matter.

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  • November 20, 2013 at 6:49 am
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    I agree, that these things should not be said. I think I’m the worse culprit to myself, though.

    You should be able to do this. You should be able to clean your house. You should be able to play with your children. Why are you tired all the time?

    On and on and on. The running commentary isn’t doing me any favors.

    Thank you for the reminder, Kelly.

    hugs,

    Jennifer

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  • November 21, 2013 at 4:54 am
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    Finally an RA site that is honest. It’s bad enough to have “regular” people ignore my symptoms, but it really hurts when some RA websites treat RA symptoms as if they will easily be maintained or just go away if the right medication, exercise, food, supplement, whatever is used. Other sites make me feel like a failure, because I still hurt, but here people seem to be more honest in how they feel. Thank you. It’s especially hard when one doesn’t have medical insurance. The strongest medications are sooo expensive!
    I have heard many of these comments. I have been accused of using my illness as an excuse to not get a job. I had a fight with the Human Services office that demanded I “work” while waiting for my general assistance to come in. This on the day I signed up for it, before they gave me their paperwork for the doctor to fill out.(without any way to pay for the doctor) They wouldn’t take the evaluation paperwork I had from my doctor, because it wasn’t on their paperwork, even though it was a federal SS evaluation. (they’re state not federal I was told) I fought and made them back down, but it was humiliating having to go through it. My ex also accused me of using my illness for everything. “Other people who have arthritis work, why can’t you?” And then have my explanations ignored and I’m treated like I make them up. What really gets to me is how I am often treated when I use a store scooter. I’m overweight, something that happened after I started taking the medication, especially the prednisone. I’ll hear nasty comments about fat people using scooters. I have tried to educate people but they don’t really care, they only go by what they see. I was homeless for 5 months, no insurance and had to constantly listen to the people I was living with that if I would only lose weight all would be better. I also have a knee injury in which my knee won’t support me, so I need a walker all the time. Steps are oh so much fun! But hey if I lost weight my knee would become better and my RA would disappear like magic! Why didn’t I think of that! What will help..hopefully, is now I have SSI and Medicaid. It may not be much, but it is better than what I had before which was nothing, borrowing money to buy medication and to keep seeing my RA doctor. Now I need to work on the anxiety and depression that has become worse as the more housebound I have become.

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  • November 22, 2013 at 11:26 am
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    Thank you for this site. I was diagnosed about 12 years ago by my family doctor and never had a symptom until this past year. Your site has provided me with answers to questions that I hadn’t even formed yet and provided me with some clarity on why I’ve been feeling the way I have. Starting to understand why I’m so fatigued and depressed even though my doctor never spoke with me about what to anticipate, whether or not I was also experiencing depression or any of the comorbidities that can often occur. He did prescribe a number of meds, Plaquenil, Sulphadine & Steroids, but I feel as though I may be better served with a specialist that addresses some of the issues I’ve learned about from your other readers and the information you’ve compiled here. So glad I found the site.
    John

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  • November 24, 2013 at 10:56 pm
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    Nice article. Ironically I am guilty of these misconceptions as well re self & others.

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    • November 24, 2013 at 11:00 pm
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      I think it helps us all to think about it that way at least sometimes, so thanks for your comment. Understanding others is something we can always improve on.

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  • December 29, 2013 at 1:14 pm
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    I actually had to quit working. I worked retail and had to lift a lot of heavy stuff and frequently had to bend/squat to clean up messes on the floor or retrieve stuff from bottom shelves. It got to the point where I just couldn’t do it anymore, but no one could understand what my problem was. My boss was a good 15 years older than me and she could squat and lift. People just can’t wrap their heads around the fact that not every illness can be “seen”.

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  • January 8, 2014 at 3:56 pm
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    Hi, Happy New Year to all,
    Has anyone on Enbrel broken out with spots all over their stomach and under arms?? I would like to know if anyone has this same problem.
    Thanks!

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  • January 11, 2014 at 9:59 pm
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    It’s so nice to her that I’m not the only one. I’ve always kept my disease and symptoms to myself, for those 10 reasons! Lucky (or not?) my mom has RA as well. She is the ONLY person who understands when I say “_____ hurts” who truly understands how I’m feeling. If it weren’t for her I would think I was insane for feeling the symptoms I do while still “looking normal.” I was also lucky enough to marry an amazing man who tries to understand and sympathizes without treating me like I’m damaged.

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  • January 23, 2014 at 1:15 pm
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    I have RA, and a lot of the entries on this list ring true. About the statement “Take care of your body and it will take care of you,” I think that chronic illness aside, this is true. When I quit smoking, my lungs healed and I could breathe and do more. When I cut out processed foods, my energy soared and I felt stronger and became more active. Yes, my body turns on itself, but you can most definitely take care of your body in other ways and feel real positive results. I do not think nutri-system had people with chronic illnesses in mind.

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  • January 28, 2014 at 9:13 am
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    Kelly. I thought after all this time I had gotten my family to understand RD. Then got in a little argument with my sister and boy did she let me have it . How fake I make it . How I’m looking for sympathy. That blew me away. I’m worn out trying to make just my family understand much less anyone else . I just want to shut up and not talk about it anymore. I know that doesn’t help the cause tho.

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  • January 28, 2014 at 1:47 pm
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    The worst things relatives (aunts) say to me are: “Oh, I’ve got that too.” Why do relatively smart people continue to say this to me when I’ve explained to them about RA? I do ask them what kind of chemo they are on and they poo-poo it away as if I am some sort of alien. This sort of sarcasm makes me ill.

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  • January 28, 2014 at 2:17 pm
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    Sometimes when I wake in the morning, I am so tired I just want to go back to sleep. It doesn’t feel like I’ve had 8 hrs, of sleep; the fatigue overwhelms me. THE FATIGUE JUST OVERWHELMS ME!!!! Besides the pain, for me, the fatigue is the worst thing for me in dealing with the horrible RA. Does anyone else have this exhausting awful fatigue???

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  • November 2, 2015 at 8:43 am
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    I’ve been told I’m “too” vegan and, also, that I’m “not vegan enough.” I don’t even know how that last one is possible, since I don’t eat any animal products at all, including honey. A neighbor is vegan, and she and I used to trade food back and forth when we’d made something special. Not too long ago, she brought over some food in a bag. At the bottom of the bag, I found a handwritten note that said, “Research has shown that rheumatoid arthritis is the result of little worms in your joints. You need to take an anthelmintic.” Needless to say, I cried for a while. I didn’t eat the food that was brought to me, afraid that she’d decided to dose me up herself, and I don’t send her food any longer, because she thinks I’m infested with worms. Turns out there’s some quack out there presenting this “scientific” theory. As far as answering the question about how one is doing, here’s how I answer that question now, after a while of pondering how to answer: “I’m enjoying the rain. We really needed it.” Or, I answer with something similar about the weather.

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  • November 2, 2015 at 12:29 pm
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    The one that makes me groan is the exercise DVD with the message that such-and-such exercise will cure every ailment. One particular DVD has the line, “Tell me one disease that walking cannot help.” True, walking can help with RA in that it is a good weight-bearing way to move. But on those days that my feet hurt too much for sustained walking, that type of exercise is the last thing I want to do.

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    Thanks for visiting this unique site full of information and encouragement to fight Rheumatoid Disease. You'll find hope, humor, and a helpful online community. I'm Kelly & I'll be glad to show you around if you'll click right here.

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