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Nice one Kelly. I have always felt very strong about this subject. Years ago I was a writer for a national newsletter geared for the parents of kids with JRA. I was shocked to see my first issue with a stock photo on the cover. That was the last time that happened.
Then there was the time when I was in a glossy pretty magazine here in Tucson, in my jean shorts standing next to my Triumph. Talking something about the importance of self-esteem and body image or some such thing. I guess they did not much care for my years on Cyclosporine, they Photoshopped the hair off my legs.
That model has got nothing on you, in fact I know a guy with a bike and I see a parity in the future. We’ll show them.
Hi Kevin,
I wrote this about 2 wks ago & had some more pressing things to publish and work on in between so it waited, which happens a lot. But I also hesitated to post this – thinking that someone might say I should just not complain because at least our story was covered at all or I got the interview so we should just be satisfied with whatever we get. Someone still might say that, but they would be wrong.
Of course, a leader such as yourself would know otherwise and I’m so grateful you took time to read and comment.
Indeed we will show them. Real patients in our publications – show the seriousness and the variety in the disease as well as the brave good people affected by it.
wow…you were robbed again 🙁
it’s so important that we realize how the whole game works. I’m so tired of how this horrible disease is represented; it just makes dealing with it that much harder. thank you so much for your perspective and for fighting for us. I think it’s so brave of you to speak out. your nic should be R.A.HERO xo
and thank you Jen. We will realize how the games work and how to get our message across. There has been this strong effort to mis-portray this disease, as almost all patients tell us they encounter. We will beat them at whatever game since we are telling the truth.
That is just so wrong on so many levels, and even immoral. Grrrr…….!!
Oh dear, on reviewing my comment – surely I must add the word ‘allegedly’ or just remove my comment please …. don’t want to get anyone into trouble for expressing an opinion!!! x
much stronger opinions than than your gentle comment are expressed every day. I don’t think anyone will get in trouble for expressing our opinion that we disagree with what was done.
If you want to give them the benefit of the doubt that they do not know they did wrong, I’m with you – they may not realize how wrong & offensive it is – or maybe like Kevin said, they do and they just want to make sure it’s as “pretty” as they want it to be.
I went thru a similar struggle recently when Johnson & Johnson spent a whole day here at my house. The producer kept wanting me to do things I dont/cant do and arent typical & dont belong in a video. We had had a long talk about it previously and she just did not understand why it was inappropriate. I think she was just doing her job the way she was taught to do it.
The article itself and you’re quotes are excellent, Kelly. Those pictures though… immediately pissed me off. “Look a pretty girl on a bike, RA can’t be THAT bad, she looks good…” I’ve never looked that good a day in my life since getting RAD. lol.
agree.
Actually I think the article is pretty well written, but unfortunately schizophrenic. The author had to both describe what RA is and sell the product on the adjacent page.
yes, I agree. She got a ton of good input from me and seems to have understood a good portion of it. There are a couple of errors in her content that I could have caught if she’d asked me to proof it. And the ending is like you said unfortunate – There ARE ways to end on a positive & there ARE things to give us hope, but glossing over it is not the answer, making it seem pretty or easy as the photos reinforce.
Kelly, I’ve been following you for almost a year after reading about you in a magazine at my rhem. Office. Thank you so much for your hard work and your important job! I just read about Vectra DA for the first time. I’m wanting to ask my rhem. About getting it ASAP as I’m going thru a really bad time. Just started Orencia but I don’t think it’s working. Should I wait for my next dr. Visit? What if it shows “normal”? I know these are generalized questions and I’ve never written on a site like this so I may sound rediculous. Thanks, Shirley
Hi Shirley,
thanks for your kind words! You should search Vectra on this site in the search box at teh top right of the page. There are a couple articles that will help you understand its role and then read the comments pages on those posts too. There is no test that is foolproof to measure RA. Vectra is a new tool and a better tool than some of the other blood tests drs rely on. But no blood test – at this point in time – can tell you whether the med is working. Only in combination with your own experience can your dr measure your response. Orencia as a biologic can take a couple of months to work. The newest guidelines say that you should try it for at least 3 montsh before changing therapies, unless you have other reasons such as side effects of course. Good luck. 🙂
Goodness, that’s so unbelievable….I hate how magazines always photo shop people all the time to look “perfect” when they are not. But then to want to actually replace a real RA patient with a “perfect” model is so ridiculous. What is wrong with showing a REAL person with REAL RA??? I don’t understand that. As a reader I would much rather see a real RA patient in a article about RA. I’ve learned so fast since my DX in the spring just how much this disease is downplayed. I’ve also learned how very difficult it is to find the right treatment. I’m so thankful to you Kelly for all your hard work to help us patients with RA. Bless you!!
I’m so sorry that they corrupted the article by using a photo shopped picture. I only wish that my hands looked that good!! As a matter of fact they were a dead give away to a friend of my daughter that I have RA. She recognized the same look from her family’s hands.
As far as paying celebrities for promoting items I can’t believe that we (the public) fall for it.
Kelly, keep up the good work and don’ get discouraged. Your articles always make me feel better.
Kelly with exception of the stock photos I thought the article was great – amazingly on point and so unlike those Woman’s Day type articles. The stock photo thing is just lazy journalism. It’s not the reporter’s fault, those decisions are always made at the editor or lay-out editor’s desk. It’s idiotic, I agree. But I was honestly surprised to read an article by someone who actually seems to “get it.” so kudos to the writer and to you for helping her understand. And regarding the bicycle – forget it! My ankles looong ago became too stiff for pushing off and balancing!l But hey, I have an adult-sized tricycle! It’s a great day when I feel like riding. Take care and thanks for all you do.
Yours, Beth
Totally agree about the journalist. I don’t blame her, but editors. Which in the end was the problem at Woman’s Day as well. they have an agenda. And we need to show them that it won’t sell. And hi Beth. Good to see you.
1. I guess this establishes that this is just a People-style eyeball-seeking magazine, not an information magazine.
2. How weird: with my best googling, I can’t find a trace of a website for this magazine! But I found it eventually: http://awomanshealth.com/insights-into-rheumatoid-arthritis/
3. In case anyone wants to “out” them on Twitter, the mag’s ID is @AWomansHealth 🙂
4. Interesting that they don’t allow comments on the article, on the site, eh?
5. IMPORTANTLY: all publicity is worth bragging about, at one level or another. These guys ain’t health writers, they’re eyeball whores; that’s disappointing but it’s not a shock. (Glad to see you already have it on your media page!)
6. For just that reason, it’s no surprise that they only interviewed you, and did NOT steer their readers to your valuable site.
7. You rock, seriously; you tell it like it is, you pull no punches, you are a model for “LOOK, you guys, THIS IS NOT WHAT WE NEED. HERE’S WHAT WE NEED.” That is the empowered, engaged citizen patient. Keep it up.
Dave, you’re an invaluable mentor to me and to our movement. Y’all take note when Dave creates a list. I’m a list girl. 😉
And yes, I finally got my press pages up and I’m determined to keep them up to date!!
Hi Kelly,
I was diagnosed with RA on Jan. 13, 2012 and put on methotrexate, however now my rheumy doc prescribed Enbrel and guess what, the insurance turned me down. I have Medicare and a supplemental policy. What do I do now???
My rheumy says I have severe RA with erosians and also have 2 prosthetic knees. Help !!!
Bonnie Larice
Insurance companies and their policies about which drugs we are allowed to take are something that drives me nuts!! Insurance comapanies are all about making money and yet they are the ones who ultimately get to dictate what we take for RAD not our doctors and that’s just wrong.
Now, I’m in Canada so I’m not sure if it’s different in the States but I know insurance here wanted me to try all of the cheap drugs and “fail” them before I could move on to biologics. My Doctor knew how the system worked so she prescribed me methotrexate and planquinal first. I had to wait 6 month before I could try Arava just to make sure they didn’t work. Then I had to wait another 6 months to be sure Arava doesn’t work. Luckily, I’m allergic to sulfa so I can’t take Sulfasalazine otherwise I’d of spent another 6 months trying that. The insurance companies want all of this documented, and they want to see that you gave each of these drugs a chance to really “work” before they’ll clear you for the more expensive drugs. Basically, while doctors have caught on that RAD requires aggressive treatment from day 1, the insurance companies won’t change their policies to reflect this because there are cheaper drugs RAD drugs out there you “could” be taking instead. This is my #1 pet peeve about RAD. We have a serious illness and insurance companies should not be able to overrule a doctor’s decision on what we need for treatment.
It’s a long, stupid, unfair process but if you can document the “failure” of a few of the cheaper RAD drugs you should be apply to reapply for Enbrel and get approved. I sincerely hope everything works out for you!
What a shame about your meds. My insurance company would not approve methotrexate so I paid for it myself for the few weeks I was on it. Nor will the insurance company pay for the wonderful Flector patches to relieve the pain in my left knee that is spent because of three falls, RA and a rough round of Hyalgan injections. Enough of that. What has happened though is my rheumy finally put me in for a program plan for CIMZIA and I got approved and surprisingly my insurance approved due to the help from the intermediate pharmacy negotiating on my behalf – all without calls from me crying and begging the insurance company to help me out.
Thanks so much Kelly for standing up on our behalf. While still walking through the steps of living with this retched disease I am learning that part of my battle is for RESPECT of my condition and not just hearing “quit your moaning, I travel as much as you, we are all just getting older….quit being such a problem patient for your doctor or it will serve you right if she fires you” This coming from a “friend” of 10 years that I have had to walk away from recently because I am in the fight of my life!
I have followed your blog for a while Kelly and really appreciate all that you have done for the RA community! I have not read this article yet (but I did find a place to get a free subscription http://www.cancercarestore.com/women-magazine-special-renewal-offer/ and look forward to reading this article!).
Just wanted to say thanks for your dedication to making all of our lives better living with this terrible diseaase!
Hi i find your site a god send. I have been diagnosed for two years and already on alot of drugs. I have been on for six weeks but had to have a cortisone injection in my right hand to day because my fingers have been closed over for two weeks. Guess what I am right handed but managing just- my hair looks a tad crazy lady.
The doctor told me that I should be able to join the gym with the right medication. My 14 year old daughter was with me on this day and afterwards was giving me a hard time for not having any energy.I walk alot and have a had a bakers cyst in my knee which slowed me down to the pace of a ninty year old. Had it drained and cortisone and it was better in a few days.
I live a day at a time and try not to over commit myself.I have 3 children and work as a teachers aide in a prep class.I have a son with mild autism and I am trying to study. A day at a time
Hi Lee. I hope your hand feels better soon. One day at a time is a help with RA – a necessity. We sure are forced to learn it if we didn’t know it before. 🙂 I’ve had some one-handed hair days too. That’s a good way to put it.
I am going to read your story in full but your right the model in the photo does not depict an RA patient.She is a picture of health and glamerous plus.
Totally agree w/you about that problem & strangely I’ve been interviewed by them for a story, too. The “pretty people” thing is a universal problem: all mags, all the time.
Sadly, this is even true in publications targeting pain/neurology! I won’t name 2 I subscribe to that constantly disappoint me, but those are their main subjects, respectively. Not only are ALL the pics of models (except when it’s a specific interview piece on a person, not a subject), their covers strive to select the “pretty and constantly pampered people” with illnesses… What I mean by that is, celebs. Where are the REAL people with pain? Can’t *we* be cover-worthy too? I’d love it if my ugly RSD legs made a cover–LOVE IT–as much as I now regret saying that ;)!
I say we beat them at their own game Kelly! If there’s a market for it like we both believe there is, people like plain ol’ you and me could create a REAL magazine about pain, warts and all. Heck, we could call it “REAL Pain!” My journalism/MBA degrees would be in hog heaven, to be sure. However, as someone else commented, maybe it’s about selling the magazines? Even on tv, their budgets for health pieces and “do-gooder” stories is incredibly low these days. It’s all flash, very lil substance. I hope it’s not what the public demands, but then again… they seem to be fine with airbrushing. *sigh*
No matter what the world “out there” is doing, I’d seriously run a REAL magazine if the public welcomed it!
Ps. Like your tagline at the top of the page. I’m a “sh*t stirrer” too, lol. It’s a moniker I was slapped with once. Even if I’m not looking for it, trouble ALWAYS finds me. (Admittedly sometimes I am looking for it in a way–by opening my big mouth on unpopular subjects like appropriately treating pain with whatever ppl need, etc.)
Yet, I’ve had many more ‘non-stirring events,’ I believe. Case in point: I was robbed yrs ago, too. It was back in those days when I actually had some $! My identity was stolen, I suspect off my Home Depot credit app. I’d filled it out just to save a lousy 10% off double-pane windows they were installing at my home. A few weeks later, all hell broke loose. Boy, did it cost me!! The culprits ended up with a pricey big screen TV from Sears and $5k in Target gift cards. Target was the bane of my existence for over 18mos afterward. They ruined my credit & all, transferred me all over their company to deal with it: credit dept, fraud division, some special investigator and countless other helpful, helpful people. Grr! Each got a copy of the police report I filed, but they were RE-LENT-LESS! It finally ended when I threatened to sue their butts off AND also take my case to the people. I said I’d protest outside Targets around the country, for the rest of my life if I had to. So yeah, they left a sour taste in my mouth. I avoid Targets now ;).