Not Actual Size – Rheumatoid Disease Is Not as Advertised

Sometimes my #rheum disease and my silly sense of humor get all twisted together into a goofball smoothie. Anyone who’s spent time with me can attest to my devotion to silliness. I’ve been daydreaming about how food ads remind me of RD. I hope you’ll enjoy a little humorous diversion. Laughter makes a great defense when #rheum pain is on offense. (As if RD could ever be inoffensive.)

Who would believe Rheumatoid Disease is this big?

In 2009, I wrote about trying to never complain about unrelenting RA that affects every joint and causes other problems: “If I were to do that, complaining would fill my days. And if I did complain, who could believe there is this much RA?” Still, I rarely talk about what it feels like to live with this monster for that very reason: Who could believe it’s this much?

Burger-King-Whopper-Jr-AlphailaJack-in-Box-Tacos-Alplhala

Not exactly as advertised

real-burger-bilboardActual food tends to be smaller than advertised food. And yes, I Googled that.

When I found comparison photos on the Alphaila blog last week, I laughed out loud and called others to come see. Have you ever bought a taco or hamburger that looked that sad? We laughed because it was so true. I told DJ they could never put that real hamburger on a billboard… but I did – in Photoshop.

Larger than anyone could believe

Rheumatoid Disease (RD), on the other hand, is much more than it’s advertised to be. We’re commonly told it’s “a type of arthritis.” Just today a reader sent me a familiar example of the “false advertising” about RD in Reader’s Digest, defining it as “an inflammatory disease that affects small joints in the hands and feet.”

Not as advertised.

Enlarged to show detail

triscuit-enlargedThe craziest thing is that when people actually living with Rheumatoid Disease (PRD) tell about what it’s really like, they’re sometimes suspected of hypochondria, or a pain processing problem, or what one patient said today “somatoform disorder.”

Do you see what’s printed on this Triscuit box: “ENLARGED TO SHOW DETAIL”? Maybe that’s what RAW does – enlarge the details about Rheumatoid Disease so that the world can see the truth.

Rheumatoid Awareness Day is a week away!

Much of what people assume about PRD depends upon what they know about the disease – or what they don’t know. Rheumatoid Awareness Day – February 2 is finally an opportunity to get the truth out about RD. Click here for updates about awareness day events sponsored by the Rheumatoid Patient Foundation (RPF). Or plan your own event for Sunday February 2 – cut some indigo ribbon and pin it to your jersey. And post a picture on the Facebook Rheumatoid Awareness Day event page.

And, click here to read about how you can double your gift to RPF in honor of Rheumatoid Awareness Day. A gift of any size, such as a dollar for every year you or a loved one has been diagnosed, would be matched thanks to a grant from Crescendo Bioscience.

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/

8 thoughts on “Not Actual Size – Rheumatoid Disease Is Not as Advertised

  • January 30, 2014 at 10:33 am
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    “sometimes they can migrate to the eyeball” ????? A real doctor said this? I am 100% unable to believe this RD writer got that quote from a real doctor. And somehow this writer managed to not be aware that when you are RA and your eyes are dry, what that really means is that you have secondary Sjogren’s syndrome. unbelievable. I want to get paid to write complete drivel RD must have some drivel openings.

    Reply
  • January 30, 2014 at 4:14 pm
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    I hate to say it, but the problem is, a lot of people DO have RA/RD that is exactly like that. I have two good friends who have RA. One has only one knee affected, that flares a few times a year. The other has only her wrists affected and they flare about once a month. Compared to what most of us live with, this is incredibly mild! But they have RA, and this is what people are accustomed to seeing RA as. The education needs to be that for some people RA is very severe, cripplingly painful, disabling and soul destroying. My rheumy’s stats are 70% of people have mild disease. 30% have mod to severe. Of those, 30% don’t respond to meds. I’m going to ask him where those stats come from, because we are that 30%! Which makes sense, because the rest of them are out living relatively normal lives.

    Reply
  • January 31, 2014 at 8:42 am
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    You are not going to get education to the public until the advertisements from drug companies actually show reality. The “Oh yes you can” campaign made an impact. Even though he has PA, the golfer does also. People opening jars slowly and gracefully walking down the beach do the same. People expect you just take a med and ‘poof’ you’re normal again. That’s advertising and marketing – it’s not always a realistic picture. And understand realistic is not their purpose – selling is.

    RA is not pretty and I doubt it will ever be seen realistically in an advertisement.

    Last year I hosted at a table for arthritis at a health fair. I was shocked at the reality of what people do not understand about arthritis, much less Rheumatoid Disease. I also heard some interesting information recently about a comparison of funds raised for diseases through their annual signature event. Decided to look up the info for my area for myself – Cancer, Heart and Healthy Babies brought in $1-2 million for their big events and Arthritis was $150,000. There’s a serious lack of awareness and understanding and until that happens patients with rheumatoid disease will continue to be seen in a unrealistic way.

    Reply
  • February 2, 2014 at 12:06 pm
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    I was diagnosed with RA 10 years ago. Since then I have done a tremendous amount of research on treatment options. I realize pharma is big business but I opted for a more natural approach to dealing with my RA flare-ups. I know a number of people with RA who are on the drugs for RA and they still are in pain and also are dealing with side effects. Many of the foods we eat affect our immune system and cause inflammation. I have quite eating anything with refined sugar in it and stay completely away from processed foods. I use some herbs to keep the inflammation down and for the pain. My RA symptoms travel around to different joints but for the most part I seem to have it under control.

    Reply
    • February 3, 2014 at 9:12 pm
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      I’m curious what you think those of us who have tried all the diets / acupuncture / supplements and still have major disease activity should do.

      Reply
  • August 13, 2014 at 1:14 pm
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    I agree that RA is larger than what was described. Yes, people don’t want to hear about the aches and pains after awhile. They do care, but it’s more than a person can bear. Thanks for seeing the humor in things.

    Reply
  • August 20, 2014 at 9:15 pm
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    I feel like your website should have “Moderate to severe” tacked on somewhere. I have what I would call “mild” RA (as in no one ever told me to what extent it was, but I was, in fact, diagnosed symptomatically and eventually became seropositive as well), and it just feels like those like me don’t “fit” here. Honestly for a mild sufferer you don’t “Advertise” correctly on here. The usage principle in particular is rather wrong for some of us. I guess I’m very fortunate in that. Five years ago when I first found this site it gave me the idea that I would end up disabled within years. It doesn’t follow that course for some of us. For those like me five years ago, don’t resign yourself to thinking your disease will be as severe as people’s on here, maybe it will, but maybe it won’t, just lose your expectations and work with whatever your RA does to you. Maybe you won’t feel as doom and gloom for as long as I did before I realized I wasn’t as bad as I or other people thought.

    Reply
  • January 16, 2015 at 4:04 pm
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    I don’t agree with that Sarah- Many posts on rawarrior say ‘ some people have a more mild form of RA, others more severe. ‘
    I was so happy to run across this site- I really thought I was ‘ loosing it’! How can it possibly be as bad as it is? Sure, I am one of the unlucky ones that have a severe form or RA, probbably because I smoke! ( another reason I should have quit years ago or never started!) but before I found Kelly & rawarrior I really thought it was in my head- I had to be imagining it because how can you have such overwhelming pain , and live with it everyday?! IEven after 8 months of this now before I try to get out of bed I almost forget I have it, until I move! …that is if it’s a night I can actually sleep through the night with out getting up because of the pain.
    If you look through the posts though, I don’t think it ever says that it is ALWAYS horrible, or you will ALWAYS end up in a wheelchair! I re-read a few posts to make sure and all I found were ‘ it could be this bad, but not for everyone’ or a few unlucky ones end up to be ones that the medication does not help.
    I went from working full-time and over-time as a waitress at a reataurant that was always busy ( my husband was out of work so I worked as much as I could) to not working at all and wasn’t even able to get my housework done!
    I shuffle over to the couch when I get up, wait for the pain meds to kick in, then SLOWLY start to move around and get basic housework done- with many breaks in between… then in the later afternoon the horrible pain is back and the meds just take the edge off. ( tho from what I have read I am lucky to have a Dr. that will even prescribe some! )
    I can no longer do yardwork, paint, go out in the evenings with my husband, to church or the kids school functions… I just can’t do it! I am so wiped out from this constant pain that even ice pack. heat packs and pain meds just take the edge off!
    I am just so thankful that I have a husband that understands and helps as much as he can, and kids that take up the slack for me! I am so Blessed!
    Thank you Kelly, and rawarrior friends! You really do help so I don’t feel so alone, and help me understand this horrible disease… something that nobody can really understand if they don’t have it themselves- how could they? Who would believe it is as horribly painful as it is unless you live it?

    Reply

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