Rheumatoid Arthritis Awareness: Sugar Coat Cookies Please, Not a Disease
Why the sugar coating of Rheumatoid Arthritis in the media?
Do you remember the insistence of Woman’s Day editors that patients were wrong and their article on Rheumatoid Arthritis was correct? The author later recanted, but the editor dug in repeatedly. That was three years ago and my first taste of the dogged commitment in the media to misconstrue this disease. If you’re new to the site, click here to see some our examples of the media’s treatment of RA.
When I spoke to a rheumatology nurses conference recently, this problem is one of the things that truly stunned them. Nurses asked me: Why do RA patients have to endure this misinformation? Indeed, patients frequently ask the same question: WHY?
The glossy, sugar-coated Woman’s-Day-RA is ubiquitous
I’ve even received letters from patients in other countries where patients say there is a concerted effort from various organizations to keep all media stories about RA “positive.” Pasting in the words of one patient, they are “woefully misleading… playing down the effects of the disease” and telling anyone interviewed “what they should be like.” Personally, I have also been told before a keynote speech that I must present the disease in a positive light. Instead, I guaranteed that the patients would “be encouraged and empowered” by my talk, and they definitely said they were.
While RA Warrior and the Rheumatoid Patient Foundation have achieved tremendous traction in a few short years, that has been because our work has resonated so clearly with patients! Patients are grateful to see their own issues and experiences discussed reasonably instead of sugar coated or ignored. To help people living with Rheumatoid Disease, we do and must tell it like it is, even if that makes someone else with a different agenda uncomfortable.
As a Rheumatoid Disease patient or caregiver, what do you think?
I’d love to hear your ideas about why sugar coating RA remains the norm. Last year, I wrote about some reasons the public perception of RA is so “rosy.” That’s a definite piece to the puzzle. But, why the insistence on minimizing statistics, glossing over new scientific knowledge about the systemic nature of the disease, and reframing extra-articular disease as co-morbidity? Patient testimony has been discounted for centuries with RA, but why ignore reputable studies that confirm patients’ experience?
If we can recognize the motives for this effort, that will help us unravel it.
Victory for patients with Women magazine
Last week after I blogged about how patients and others had been disappointed with the images chosen after my recent interview for a story about Rheumatoid Arthritis in Women magazine, I had a very productive discussion with the editor. I’m not sure whether they read the many comments here and on social media, but they definitely got the message that patients did not feel accurately represented by those models, however lovely. The great news is that Women magazine is committed to communicating with us in the future to be sure that Rheumatoid Disease is characterized accurately. They see value in becoming a trusted source of information, which is how the media is supposed to work, right?
Postblog: Patients are by no means alone. There are dozens of articles here on RA Warrior about the great work of doctors and other investigators who recognize the seriousness of Rheumatoid Disease and who’ve spent their careers dedicated to our cause. We’ve been especially appreciative of the work of Ted Pincus and his colleagues, Mayo Clinic’s Sherine Gabriel and John Davis, research funded by the ACR’s REF, and the words of Dr. Steve Paget which in many cases echo what patients know firsthand.
Recommended reading
- Woman’s Day RA Is Destructive, but Phil & Venus Have Cred
- 3 Reasons Why the Public Image of RA Is So Rosy
- Video Blog: Two Essentials with a Rheumatoid Arthritis Diagnosis
Pass me one of those sugar-coated cookies, but please keep that sugar away from my RA. Well. . .that’s not exactly correct. I would love a little bit of sweetness for my RA, but not in the form of covering up what it is and how it affects my life or the lives of others with RA. Why do “they” do this to RA? I think part of it is the desire to define & package neatly a disease that can’t be packaged. (Although those of us with RA understand each other, our RA varies widely & wildly.) Another thing I encounter that might be an influence (perhaps among some medical folks) is the desire to help us keep our chins up. In other words: Perhaps if they tell us how simple it is, we’ll believe that and feel better. OF course, we all know that’s ridiculous, plus that kind of thing (“Your RA is simple; just lighten up.”) only serves to make us feel discouraged about what we’re actually experiencing.
yes, from what I’ve seen from thousands of patients is that they feel discouraged and alone. They tend to believe they are “outliers” and that everyone ELSE is really fine with RA, until they meet so many others like themselves.
Its painted as rosy, because, let’s face it, the reality of RA is scary, overwhelming, and full of fear and unknowns. No one really wants to take a look at their own aging closely. Especially when people with RA, sadly, will not age gracefully. It’s just too painful so people jump to the most positive words and comments they can conjure up.
I think it’s entirely possible to paint the disease in a REALISTIC light while we make the best of a terrible illness. Perhaps it is because the latter is what sells more magazines. People love to hear stories of triumph and 100% remission that lasts forever. I think it touches people deeply and in a frightening manner to contemplate that a disease may last the duration of a person’s life and cause pain, deformity, and lots of other symptoms that may never go away. We face these things every day as RA patients, but the general public doesn’t really want to face what we’ve had to accept as reality. When I’m communicating with people about RA, I try to hit that balance and discuss how difficult life can be with a chronic illness but that a fulfilling life is possible despite the situation we’ve been placed in. We make the best of what we have. My mind has triumphed over RA, but the truth is that my body has and always will be affected by the disease unless some miracle cure is found. I’m OK with that. It has been my reality since I was a little girl. Most people just aren’t interested in that bleak side of RA. We just have to keep telling our stories ourselves since others don’t necessarily portray them accurately.
I agree that it’s up to us to tell the true stories, Tina. And that it’s possible to tell a compelling story about rheumatoid disease that will even sell magazines – as I told the editors of Woman’s Day 3 yrs back and Women last week, there are many inspiring stories of those who continue on in spite of the obstacles and live out their lives in ways that are heroic – these stories would also sell, with the right balance being presented.
I do appreciate your informative articles related to RA. But if, you are a warrior in this fight. It would be nice if, you would share more information on support groups. I e-mailed you a long time ago. I live less than 20 minutes from Cocoa and could possibly, help you with your endeavors. But, I have yet to receive a response. I apppreciate all your efforts but, if you cannot connect to those especially, close to you. That could help and also have alot of prominent contacts. I find alot of your efforts to be waining.
I’m not sure why RA is downplayed in the media. But it definitely is. Ignorance abounds…willfully.
I think a lot of it has to do with the fact that there really is no controlling who gets it. We know that if we live a healthy lifestyle that we have some assurance we won’t get certain diseases, like cancer or lung disease. But with RA and autoimmune disease, it strikes anyone, anytime, for no reason, even if we’re doing everything “right.”
Painting a rosy picture in the media, IMO, gives people a false sense that even if it does happen, it won’t be all that bad. Look at this person, who returned to a professional sports career, or that person, who went dancing all night after taking a single pill. No one wants to talk about the fact that this represents a dismally small percentage of patients. The vast majority struggle to find ANYTHING that works even to a small degree, and for many, that magic combination of drugs is never found.
Painting a rosy picture sells expensive prescription meds and cheap over the counter meds, but it also sells people on the idea that RA isn’t all that bad. Which is not the truth. It’s a serious disease that can kill as easily as cancer. And we are no closer to finding a cure than we were 50 years ago.
I strongly believe that the word “arthritis” is a main reason for the rosy picture. When people hear the word “arthritis,” osteoarthritis –that achy feeling that everyone seems to have — immediately comes to mind. Not only do we then have to attempt to explain what Rheumatoid autoimmune disease is, we have to expain what it isn’t. I always try to use Rheumatoid autoimmune disease when talking about the illness…and, yes, I have had the response, “oh, you have arthritis, my cousin has that too, her knee aches on occasion.” Small steps.
agreed!
I too have seen some of the photos of these beautiful,happy seemingly well adjusted people who are apparently suffering with RA. I have also wondered what planet they live on.
There are days, perhaps weeks when the situation is close to bearable but there are also weeks when I can not brush my teeth because I can’t hold the toothbrush let alone squeeze paste onto it. On those days I resort to mouth washes and eating crunchy apples while hoping it is an adequite contingency. There have been many many times when I can not lift the blankets over me at night when they fall off. I have a ton of examples of the problems we contend with on a daily basis.. Media has no idea and apparently do not want to be informed.
No, and sometimes it is not very pretty.. or attractive when it happens that we are unable to stand up from the toilet or even lower ourselves extreme pain.
It is disgusting that we are portrayed as these lovely people with no nodules or deformities.
We seem to be all mobile and active with smiling faces, youthfull and free from stress.
Some of us can’t wear bras, any clothing with buttons or zippers, normals shoes and need help to even clip our own nails..
Tell the truth. While it is not always bad, there are some good stories but there are also some very sad ones.The media needs to find a proper balance.
Let’s face it when we are first diagnosed with Rheumatoid Arthritis we try desperately to get people to understand. We explain over and over, till finally we say “forget it”. They are never going to understand. Only people with the disease understand the disease. It’s automatic “arthritis” means Osteoarthritis. So after a while we put on a pretend face and act like we are ok. Because if we don’t then people and I mean family included think we are taking the disease overboard. When in reality we are not taking it overboard. In fact we do our best to attend family gatherings, even when we wish we were home in our PJs.
Just because some people do everything right, they still can get cancer. People don’t downplay cancer. Why should our illness be downplayed? We suffer with pain. We live and struggle with fatigue. There is no miracle cure. Yes some people will die earlier due to the complications from Rheumatoid. People need a wake up call. United we stand. There is strength in numbers. We must stop taking a back seat to this dreadful disease and empower the general public to how dibilitating this disease is. We are just as important as the next person out there. We have rights!
That’s exactly right how almost everyone I know w/ the disease responds after a few weeks, we say why bother trying to explain because we are dismissed. So we become very private about our symptoms. I am the same way Sheila, I write on the blog, but I do not speak up about it to neighbors or relatives who do not want to hear the truth any more. It’s very hard to face people who put you down and pretend it’s not real just because they don’t understand the disease.
I think the media is directly impacted by the ads that are placed by the big drug companies for drugs used to treat RA. You see commercials that depict RA patients ridding bikes, bounding down staircases, and participating actively in life. These drugs are made by large pharmaceutical companies that are very powerful. It’s not likely the drugs would sell well if the truth were told about the reality of remission, that it is a brass ring few can reach. The lobbyist that represent these large pharmaceutical companies impact our laws. Why do you think the same drugs cost pennies in Canada? What new RA patient is going to invest in a drug therapy that costs thousands of dollars when the chance of that therapy not working is fairly high? This is a multifaceted problem. I think we are slowly going to start to see the tide change now that patients are organizing in social media and the Rheumatoid Patient Foundation is growing. We deserve to be heard. It’s time that health care professionals and pharmaceutical companies listen to us rather than tell us how we should feel.
I would like to clarify that the drugs in Canada do not cost pennies. Humira and Enbrel cost $1800 a month here too and if you don’t have a job that comes with excellent benefits you’re SOL. Hell even if you have benefits the biologics require a special preapproval and the insurance company reserves the rights to deny you the drugs. Health care is not “free” in Canada.
Thanks for making that point, Melissa. At first my insurance covered 3 months’ of Enbrel via a mail order pharmacy, then cut it back to one month at a time. Now they have cut in half the dose they will cover – unless the pharmacy goes to bat for you to get an override. Actually a double override – first to get it covered at all, then to cover the full dose. I would have only gotten half of what my doctor prescribed. When I asked why, I was told it was due to “price increases.” WTH?
People here in the U.S. worry about the Affordable Care Act spawning “death panels.” Guess what, people the death panels are here – they’re called health insurance companies.
Most provinces in Canada have “catastrophic” drug plans that will cover some of your drug costs. The coverage is based on family income.
How can anybody fight something, when we don’t know all the facts. I believe we’re strong to live with this disease, don’t sugar coat things, that way we don’t feel bad asking for help. I say shout it out, with all diseases it can through into the mix. That A word I believed ment it was just bones and joints, wrong, it’s given me ILD, torn tendons. Make people aware. These things can happen, then hopefully, fellow RAs, will know early signs, and hopefully nip them in the bud.
I agree the A word is a problem. As I’ve said, there are no joints in the lungs. So it’s rheumatoid disesae, not arthritis that attacks lungs such as in your case. Making people more aware will save lives. There is not excuse to continue the sugar coating.
I would personally like to see fewer pictures of very aged hands that accompany the articles. My hands aren’t too bad yet (one of the reasons one rheumy felt I couldn’t possibly have RA) but one of my cousins needed the joints replaced in both hands by the time she was my age, which is 38. Now, my fine motor skills are deteriorating due to nerve impingement from my cervical stenosis, which was caused by the RA, but most rheumys won’t even discuss that. One mentioned that it was osteoarthritis in my neck because RA doesn’t cause that. Well, how did I get osteoarthritis in my cervical spine in my 20’s? I never had any accidents or sports injuries. Yet we know that the majority of people with RA have cervical spine involvement very early in the disease. Ridiculous.
yes. good points.
and how many of us have ever had our cervical spine examined by a rheumatologist? In spite of the fact that 87% have neck involvement w/in 2 yrs of dx? And many of us well before diagnosis?
Why not sugar-coat or rosify all of our Rheumatoid Disease?
Most of the doctors we go to do not seem to know what to do or shrug off any problems we have to address with them. I have had three different RA Docs and only one came a little close to being helpful. Of course the media doesn’t want to report on disease with no cure and not a lot of sources out there are intelligent with all their schooling to be reasonably accurate or helpful. Think about all the problems of disease with cures and multiple pill ads to offer help. Most of the RA prescriptions though helpful can kill as well as help and who wants to know that? Talk about falling into the rabbit hole! Well we have and suffer because of labels and misunderstood symptons! Nobody wants to know about something as damaging as our sweet RA! How do we make people want to understand and help when there is no real selling point and no cure?
Thanks Robyn.
I think the “no selling point and no cure” is interesting. I’ve often thought that if it was like lung cancer and we could say how to “avoid” getting it for most people, then there would be more interest in public service announcements. But there is not because there is nothing at all you can do to avoid it or get rid of it. No selling point.
Unfortunately, as you probably see, we hear that too often about how hard it is to find a doc who is up to date and who listens to RA patients.
RA needs to be clearly discussed in the media, so that people can gain an understanding that this is more than osteoarthritis. But if to much emphasis placed on the morbitity rates from complications, it may scare people, and delay them from seeking treatment in earlier stages. I know that I would have been more fearful of seeking a diagnosis if I had thought it was a death sentence.
Janet, I hope that when the truth is presented accurately, people would get care earlier like they do with cancer now. A long time ago, cancer was just a death sentence and nothing more. But with aggressive early treatment, it’s often “curable,” depending on what kind. Rheumatoid disease is similar because the only real chance of remission is early aggressive treatment. Delay means more damage, more disability, and probably greater chronic problems w/ inflammation that does lead to earlier death. The public needs to know that it’s a serious disease w/out a cure, like cancer, MS, and diabetes, but that those who get treated earliest will have the best outcome.
I am not sure if this would be an example of sugar coating but I am certain it is an example of the misinformation that is out there. We really need to get the word “arthritis” out of the name. I happened to catch just a few minutes of Nancy Grace last night as they were discussing a case in which a woman murdered her husband. I am in no way trying to defend what this woman did but I heard several comments from the lawyers that offended me in the five or ten minutes that I watched. First off, they continually showed a before prednisone and after prednisone picture of the wife. They spoke with a doctor who blamed the change in her appearance on excessive eating. Next, another lawyer said that she shouldn’t have had an “entire pharmacy”(I believe that is the term he used) for arthritis. Lastly, they spoke of how much time she spent in bed while her husband was out working. As a stay at home mother when my children were small, I was offended by Nancy’s statement that the woman did nothing at home all day while she had a little one at home and two in school. Now I do not know the woman’s circumstances and again I do not approve in any way of what she did but I believe it was inappropriate for them to be discussing these issues. I would think that they should be blaming her for the murder she committed. I had to turn off the television because I was so angry. I wish more people could understand the pain, fatigue and disability RA causes, along with all the meds and their side effects that RA patients have to endure. It is no wonder that we aren’t able to get the support and research that we deserve to find a cure. After all it must just be a minor annoyance…NOT. Sorry for the rant. Thank you, Kelly for all that you do to bring light to these issues.
I agree with your comment, yet another example of myths thrown out there.
I don’t know why RAD is covered up with so much beauty in the media. Only we as patients have the reality about this disease. That’s why we have this site to bring awareness about the facts of RAD and what we face daily. Thank you for your fight to take the icing,sprinkles and the beauty off about RAD.
It’s interesting, isn’t it?
There are probably several reasons. First, as others have pointed out, Big Pharma spends boatloads of money buying two and three page spreads hawking biologics, and I’m sure they are happy to have those next to an article about someone with RA who competes in triathlons when not entering piano competitions and re-roofing her own house.
Second, we like to believe there is a quick and effective solution to every problem, just like on all those half-hour sitcoms where everyone hugs and reflects on the wonderful lesson learned in one short episode. (The lesson is never “This sucks big and I have to learn to live my life in spite of it.”) This is especially true of disease. I remember when the AIDS epidemic really started. We had a whole generation of people who had no experience with people- lots of people, most of them young and vital- dying from a communicable illness. It was the late 20th century, and we supposed to be past that.
Third, they usually interview a doctor or two for these articles. Most doctors won’t tell a journalist, “You know, I hate this awful disease. There’s not much I can do for a large percentage of my patients rather than watch them deteriorate.” They will instead talk about the patients who have done really well.
There are, of course, people who ARE doing really well with RA. It’s just frustrating when that is held up as an example for the rest. Disease progression has no relationship to moral failure.
I would say that some doctors contribute to this problem. Note that I say “some,” because it’s most certainly not all. Every time I leave my rheumatologist’s office I get the strong feeling that they don’t think my case of RA is so bad. And you would think they would “get it” because they work with one of the doctors you mention in your postblog who gets it. If even the doctors don’t believe how bad things can be for us, then what hope do we have. I wish my doctor understood how much harder this journey is when I am made to feel like I am a fraud, but I’m afraid to say anything because, of course, who am I to question their judgment or opinion?
Dear Tracy, that is a terrible feeling and I’ve had it too. At times when I’m reading a ridiculous “research” article that accuses Rheumatoid patients of exaggerating pain or other symptoms, then I have a very somber realization of how far we have to come and how difficult the battle is. At those moments, I think about giving up after all these thousand of hours of writing or talking with patients – and then I look at some of the letters from people who were given hope to keep looking for care they need. And they got that care and for them real change came. So, one of us at a time.
Of course you are not a fraud – and the fact that most RA patients have been made to feel that way should make it even more clear that it’s not you.
I think it is very common for Rheumatologists to make patients feel like their RA isn’t that bad and that they are exaggerating. The problem with this is that we often internalize these things because they are the ones with the white coats on and the years of medical experience. We are taught to believe every word a doctor tells us. Then we take home the message that we are faking it and it is all in our heads. This causes all sorts of problems at work, at school and at home because we try and do more than we can are are depressed when we can’t because supposedly it is all in our heads. Its very damaging psychologically and I have a lot of hope for the future!
Anne, what you say strikes a chord with me. I am doing pretty well – now. I like to think my 47-year journey can give hope to those who are just starting out on the difficult path I’ve walked (hobbled?) to get here.
Now, I can walk for exercise, do most things that need to be done, work (from home), and even get my motorcycle license. But no one knows what it took to get me to this point – the terrible flares, dozens of meds tried and failed, the multiple joint surgeries, the fight to keep RA from taking my eyesight, the struggle to give birth and care for my children. If I’m smiling now, its because so far I’ve survived and found a way to thrive. But I couldn’t have done it without help – lots of help – from people who get it.
Thank you Carolan! It does give us hope that one day we can have less pain or do more than we can do now. When it’s day in and day out with out needed help or improvement for some, it can get hopeless. So we really appreciate your sharing that.
[[hugs]] I have been in that hopeless place, crying in the shower because I can’t lift my arms to wash my hair. Hanging on for one more day because the alternative was unthinkable. I wish I could take every single patient’s face in my hands and tell them they’re going to be all right. It won’t always be like this, but even if it is, life is worth living.
That is what I’ve tried to do to, many times. That is what keeps me going as I said to Tracy.
My first question is always…How can something labeled a DISEASE be talked about positively? I mean we can talk abotu how we get by, products that help us, how we try to stay upbeat, but the disease itself is not positive! We all now the various ill effects of the disease, the other disease that come because of the RA, and the side effects of the meds! The public isn’t stupid. Things to not need to be dumbed down. If someone reads an article that is sugar coated and thinks they may have this disease then they are going to look for further info anyway! Give them the real goods at the start so that the confusion is lessened and so that others realize the difficulties we face and that we may need help in various forms. The media needs to start helping us, not hurting us.
Good points, Shannon.
And by the way, they are careful and they generally DON’T label RA as a disease. That’s why we call it “Rheumatoid Disease” while they call it “Rheumatoid Arthritis” and refer to it as a “condition” and “a type of arthritis” and avoid the word “disease.” They are wrong factually, but that does not stop them.
[[who am I to question their opinion?]]
Who are you, Tracy? You’re the one paying the doctor’s salary! As a consumer, and the one on the receiving end of their opinion, you have *every* right to question anything that affects your body. You have the right to say, “Look, we need to talk. I get the impression you don’t think my case is that bad. Well let me tell you exactly how bad it is…” and let them have it!
Doctors need every scrap of information they can get their hands on. If the patient doesn’t talk, doesn’t tell the truth about her life, that leaves them guessing. Don’t make them guess, tell them the raw truth. If they still don’t get it, fire them and look for another rheumatologist.
But….. fire them and go where? There is no where else to go. This rheumatologist is number 5. The other 4 either told me I wasn’t sick (!) or refused to treat the disease aggressively. At least doctor number 5 has me on mtx and a biologic. There are only so many rheumatologists in my area. I already travel 3 hours each way to see this one. And the more doctors I leave in my wake, the less credibility I have with the next one, because of course if I can’t stick with a doctor, the problem must surely lie with me.
I have learned from the previous 4 rheumatologists that the more I stand up for myself, the more I am viewed as “difficult.” So it’s really not that simple.
And the kicker is that I have been checking this website frequently to try and reach out to RA patients in my area who might want to meet up once in a while so we could trade notes, and support each other. And guess what? I found only one person in my area and apparently I don’t merit their time or attention because once I confirmed to them that I don’t have kids, they were no longer interested in meeting me because apparently I can’t relate to their life — because they have kids and I don’t.
So the discrimination and lack of appreciation and respect exists, even between the patients…. I just don’t get it.
Aw jeez, I’m sorry. 🙁 My own rheumie abruptly retired recently for health reasons, and there wasn’t another rheumie in the immediate area who A) was taking new patients, or B) I’d send my dog to. So like you I’m also traveling a distance to see what I hope is a good one.
Many of us are in that position now. There is a shortage of doctors in many areas & most rheum docs are older & they are retiring quickly, and there are many who are not up to date with methods of disease management or patient outcome measures or tight control or how often to adjust treatments, etc. It is hard. We hope we can eventually make it easier by recruiting more into the field, but this will take time.
I think a lot of the above comments are very true, Drs., disease name, regular arthritis sufferers, media and a ton of others have “sugar coated” the disease. People in general gloss over the disease by saying “my auntie had it” or whatever. Until awareness is more prevalent, and the patient community stands together it will be so. The drug companies will steam roll their wares, and make you feel good about watching the commercials 🙂 .
It’s because of our heroes like Kelly and RPF and others, that these questions are even being brought up by some of the medical community. It’s tough to make people realize how terrible Rheum Disease is… Sometime I think as a community we try to tell and spread the word, but in the end most people just roll their eyes when it does not affect them or someone they love. I always point out that it is a autoimmune disease…along with the AIDs acronym. That seems to help some folks realize how severe this disease really is. People @ work who know me no longer “sugar coat” it, as they see what it does as I hobble around some days, and nearly collapse into my keyboard with fatigue. Pass the sugar, 1 lump or 2??
Keep RA positive? RA suffers have to put on a stiff upper lip every day! And the media thinks we should keep RA discussions light & airy? What???? That’s like telling someone that they are lucky to have Cancer! I don’t need anyone falling all over me with sympathy . . . but I would like people to have an idea of what I am dealing with. It was suggested to me by a well meaning friend that if I took enough anti-depressants I wouldn’t care that I had RA. This is a debilitating disease and people need to know this!
This is a great point. What a contrast the RA-lite viewpoint is to the truth that almost every Rheumatoid patient i’ve ever known lives with silent pain & putting on a stiff-upper-lip front all the time.
my heart goes out to all that has been diagnosed with this disease, i cannot imagine the pain you all go thru. my daughter has lupus and body pain all over plus seizures from a accident….my neice has ra I donot get to see her as she lives in another town but I know of some she goes thru….God Bless each one of you and never give up hope. you each are so needed on this earth, your courage and perserverence are honored. keep on keeping on. Jesus loves you all.
Thank you Jean. How dear of you.
Lori,
I’m not sure how long you’ve been a part of RA Warrior, but Kelly has organized at least two get togethers for locals in the Central Florida area in the last couple of years. She makes every effort to connect with other Warriors. I’m not sure why you say her efforts are “waning”…I live in the Orlando area and am on the Board of the Rheumatoid Patient Foundation with Kelly. I communicate with her on a regular basis. I know how much effort she puts in. I’m sorry if an e-mail you sent to her has not been answered in a timely manner. Did you know that Kelly receives hundreds of e-mails every day/week? She tries to answer each of them personally in between researching and writing her blog, giving interviews to magazines and webpages, preparing talks/speeches/slides to present at professional meetings all around the country, traveling to said meetings, creating a 501(c)3 nonprofit for RA patients, writing and submitting grants to obtain funding for the nonprofit, leading an RA chat every Sunday on Twitter, responding to Facebook page posts, home schooling her children, taking care of her children’s needs, not to mention dealing with her own unrelenting RA… So, if you ask me, Kelly gives a Hurculean 110% effort to everything she does. She is doing the work of 10+ staff members that she doesn’t have. She doesn’t get paid for any of it. I don’t mean to be harsh, but I really think some people do not realize all that Kelly has on her plate. If these people could show her a fraction of the compassion she shows others, well, this world would be a better place.
By the way, if you are interested in a support group, you might want to contact Arthritis Introspective, another nonprofit. They help others organize support groups all over the country. If there’s not one near where you live, you could use their guidance to start one.
Hi,
Thanks for the great info and support i get from reading these blogs.For cleaning teeth an electric toothbrush is brilliant, even my dentist noticed the difference.Today i have been to plumbing shop to change shower and laundry taps to levers,my husband had done the rest, but i said the other day how i grimace and need two hands to turn the tap for the shower, he was horrified that i hadn’t said anything before, but i guess its wearing to be asking for things like this, this keep positive and not complain ends up a trial.What impressed me was at the plumber shop, he looked at my swollen knuckles and said you poor thing.
Sometimes that sort of reaction is nice, rather than have you tried blah blah blah.
We still need better diagnostic & monitoring tools when even my wonderful rhuematologist has to look for ways to see what is really going on how do I convince Joe smo on the street? My cervical spine has joined in the fun and my doc is really good no doubting I needed specific x-rays that day and we would need to keep an eye on that! However my x-ray just shows nothing is to the point of falling part yet well I knew that but really do I have to wait till then? I am one of lucky ones with a dr who is actively listening and working with me for a solution as I seem to be not responding to med after med but easy to see how friends, coworkers, family, and even doctors have a hard time seeing this invisible disease is SO different than the media painted picture!
So well said, April. I know that your journey is very common, even with a good rheum doctor like the one you have now. Patients need to be part of developing more reliable methods to monitor disease activity as well as treatments. As far as the neck, I think most of us are in that boat – if the disease is active & meds don’t control it, we just keep an eye on it until it needs surgery. Symptoms can be treated with meds or injections or RFA, but I know many people who are asking the same question as you: Is that the best there is?
I must admit, until I was diagnosed 4 months ago, I knew nothing about this disease. I remember when they told me I needed to see a rheumatologist, I thought, “why am I going to see an old people’s doctor? I am only 45.” My thoughts went to rheumatism and the Baldwin sisters on the Walton’s and there special “recipe”. I thought, what is happening to me?
I did two sets of blood tests and was tested for RA, myeloma, parvo, lupus, thyroid, and Lyme disease, among others. I had some inclination as to what most of these were, but I had no idea about RA. I read article after article to try and educate myself, just in case.
Most of these diseases have had some kind of awareness campaign. I remember a radio ad for lupus not too long ago with the tagline, “Somebody you know has lupus.” But RA? That was about as foreign to me as the black plague.
I try to avoid talking about it at work for the same reasons that everybody else here does. Responses range from “I know how you feel; I have bursitis in my shoulder” to “Is that what Phil Mickelson has” to “yep, got it too. My knee stiffens up when it’s going to rain.” I have gotten to where I just tell people, “I am having a little pain today”. But when I walk in with a brace on my right wrist one day and my left the next, I get some rather odd stares.
As a parent of a child with Aspergers, I have seen the awareness of this condition grow since my son’s diagnosis. I can only hope that as time goes by, awareness of RA increases.
Dear Lee,
You summed up well the experience. We’ve heard tens of thousands of comments that tell similar experiences.
We are hoping it changes too, and we are working to make sure that happens. The millions spent on awareness of Lupus were not by chance, but due to the foundations they have to create such pressure to get funding for such ads, in part from the government. For the first time, there is such an organization for RA patients now, the Rheumatoid Patient Foundation at http://rheum4us.org.
Again you are on the money – sugar coated all over the media! I love the ads where they say “Living with the pain of moderate to severe rheumatoid arthritis?” and the pretty, active young woman holds her shoulder like it hurts her while playing an active video game. Where is the ad that shows her needing help to get out of bed in the morning or with her hands so swollen she can’t brush her teeth or hair? The ads downplay the symptom severity and oversell the drug’s effectivness. This contibutes to the public’s perception of the disease. I firmly believe that while we have the pharmacutical companies to thank for the biologicals that we now have that have been real game changers in fighting this disease and many other autoimmune illnesses we also have them and their ridiculously expensive ad campaigns to thank for the sugar coated public perception that is so prevalent.
Thanks, Leslie. I agree that ads have not sufficed to inform the public about rheum disease. Unfortunately, I’ve often heard that the ads themselves are sufficient awareness tools. Not from patients though.
I think the key is that the biologics have been “game changers” only for some. Clinical trial success rates are pretty consistant with them. Only about 20% reach that ACR70 improvement level for as long as the drug works. About 29% get no better than ACR20 improvement, which is mimimal, and 34% are non-responders. So almost 2/3 have a minimal response or no response. The public perception is that this is a problem solved since there are effective treatments. They aren’t told that there are only effective treatments for some and that even those patients who respond still live with RA.
Hi Kelly. Also, the stunningly positive Abbott 10 year Humira trial update is completely misleading. Only approximately 33% of people with RA who started the treatment were followed for the full 10 years. Abbott’s conclusions are therefore totally misleading when 67% of your research population is not accounted for. How are the 67% doing?
I’ve written to Abbott to ask to see their full research report. Of course, no reply. Abbott’s positive findings on these 33% were presented at the EULAR conference in the summer 2012 and have been all over the media. Their profits are astounding and Humira is the number one selling Biologic in the world. As a researcher I want to see the actual data.
I was diagnosed with RA 5 months ago in the middle of my doctoral program. I have not had one day without pain and significant deterioration physically and functionally. My RF and anti-CCP are both positive and very high. I’m on methotrexate injections, hydroxychloroquine, and Humira injections. Nothing is working well and I’m watching my body and mind deteriorate right before my eyes. It’s terrifying and has totally changed the course of my life, where I live (moved back to Canada), my dreams, occupation, my relationships and yet I see myself as a resilient person. I do all I can to address the disease in every area of my life. I’ve been accepted to a one month intensive outpatient day treatment program where I’ll have OT / PT / Social Work / Nursing support. I’m also seeing a Vocational Rehabilitation Counselor next week. I hope to learn all I can to manage this horrific disease.
Kelly, will you please contact Abbott on our behalf to ask them to release their full research report about the 10 year study on Humira to you. If this fails, please consider spearheading a Arthritis Foundation patient letter writing campaign to Abbott.
A million thanks for all you do. If it weren’t for RA Warrior, I think we would all think we were exaggerating or mis-perceiving the course of our disease.
Kelly, I call the biologics game changers because I don’t think we want to forget the impact that they have made on the treatment of the disease as well as the treatment of other autoimmune diseases like lupus and chron’s. The TNF inhibitors are where they finally began to see RA for what it was – an autoimmune illness – and not it’s primary symptom – arthritis. I agree, it’s almost criminal that the drug companies can so blithly gloss over the 30+% nonresponder rate as “your results may be different” and add up all the 70, 50 and 20 to get their 20% response rate. But when Enbrel first came out, there were people in wheelchairs that were able to get up and walk – easy to see why this was touted as a miracle drug. It’s the ads! And the false idea that the drugs work for everyone! And the drug companies perpetuate that idea with their ads and with their websites.
They use these same drugs to treat lupus and chron’s but you don’t see ads on TV for them – why? Fewer patients? I think it’s because they don’t always work and these people still die of their disease. For the same reason you don’t see ads on TV for cancer drugs. But there is no direct link in the public’s mind between uncontrolled RA and imminent death, so they can get away with this.
You are so on the right track here. Public awareness is the key. People need to understand the disease and how devastating it is. I look around my house and see how my life has just gotten away from me. I can’t keep up. I don’t have the strength or energy. And I am in pain. I have an entire pharmacy in my bedroom and a sharps container in my kitchen! Two years ago I was happily golfing and weeding my flowers and refinishing my hardwood floors – now I have a cleaning lady and hired someone to mulch and weed my landscaping! I am fortunate to be able to afford to do this though it’s a stretch on my budget and I waited too long to make that choice – things are a bit out of control.
Just one word of caution. When we are trying to gain awareness for Rheumatoid Disease we need to be gentle with osteoarthritis. I have seen more than one comparison that makes osteoarthritis sound like a small thing by comparison to rhuematoid arthritis and for someone who has osteo in one joint or two, there really is no comparison between the two diseases in terms of pain and disability, but there are many people who have generalized osteoarthritis or erosive osteo who have enormous pain and disability and practically no treatment options. We must never belittle anothers pain to gain awareness for our own. I would suggest that we try to differentiate RAD as an autoimmune disease more closely linked to lupus than to osteoarthritis.
Hi Leslie. I really appreciate your insightful and balanced post. I was touched by your story and your perspective. Thank you.
dunno how I missed this. sorry. maybe one of the kids approved it for me!
Good point. A completely different life. My old life – few shadows of it remain. My one vbff but not much else is the same. Not having the money to make some needed adjustments, I watched my “House Beautiful” really fall apart in many ways. But it’s worse for others, and someday somehow that will be addressed. It is really small pototoes in light of the rest of what I lost. I now go to sleep intending to dream of running on the beach, determined to enjoy it somehow.
The OA? Pretty much everyone has some OA and having rheumatoid disease almost guarantees it – so our community is made of people who end up living w/ both. The average RA patient does have OA too & depending on which rheumatologist she sees, the average rheum patient has FMS too. Most of us get osteoporosis too. I’ve never seen what you say, but I have heard several patients in the community post that warning that we must not ever mimize OA. I have not seen it done tho.
The “autoimmune” might be another point where we should use caution tho. Speaking with researchers, there is some possibility that Rheumatoid Disease will be one day be understood to have several types included. And autoimmune is not necessarily going to be correct for all of them. With positive ccp, it is autoimmune but there could possibly be other mechanisms included that are not yet known. We are very cautious about broad brushing with that word now, based on that advice. Yes, we do explain the diseaese as being more similar to Lupus. I have often called it a sister disease to lupus and a cousin to type 1 diabetes.
I do have several friends who use wheelchairs regularly in spite of having used the tnf’s etc. And over the past couple of years, I’ve also known a couple who died from the rheum disease so my perspective is very different from those who create those ads. AND, on that topic, we are making very good progress. We have had a number of productive discussions w/ industry folks and given several talks now at events. They are well aware of our position & there have been indications that we are making progress in some cases. We have seen changes in literature & websites. And there will be more changes & collaboration w/ patients. At this point, one thing we watchout for is the way some are really trying to pick up on our lead by “using” patients to promote their goals or products instead of ours. We do need to work together. We do have a critical mass here now & a voice that they are listening to.
Have a good day. <3
I literally just got told, once again, that my disease is not chronic by someone who has no medical training whatsoever. So tired of this! This disease needs to stop being misunderstood! It is enough to just deal with all the pain and psychological effects of disability, but to have it constantly thrown back in our faces…well, its just not fair! Keep up the good work Kelly!
No it’s not fair at all. And lately patients have even seeing some md’s piling on through social media making fun of RA patients. Life is never fair, but we are definitely going to fight back against the sugar coating that amounts to lies.
Yes, in Ontario it’s called Trillium. You can get full coverage for super expensive medicines even if you make up to $100,000 a year but you have to get your doctor to do the paperwork and wait for approval. The real problem with RA drugs and the Trillium program is that some drugs require multiple failures on other biologics first and “evidence” of disease activity with ANA stuff, xray evidence of deformity, and joint swelling.
I mean how is it fair that not even seasoned rheumatologists have a method for tracking disease but a drug program thinks it has it all sewn up? THAT is the issue in Canada for RA patients, which creates a problem for me being a U.S. citizen who is becoming a permanent resident with my Canuck hubby up here. I’m on Orencia right now which is one of the drugs that Trillium requires three previous drug failures in addition to all the markers of severe disease activity.
Then, the program is reluctant to add new drugs because their advisory panel of doctors say it’s pointless to add new drugs to the Trillium list because the drugs they have already work “fine.” We really need an RA revolution around the world because in Canada at least the misinformation about RA and its drug treatments are causing some serious problems for patients.
Hi Brooke. It’s my understanding that rheumatologists in BC can write a letter to our BC Fair Pharmacare program asking for an exception to the regulations and then approval for a specific medication can be granted. I don’t know if this is the case in Ontario.
I also feel that our disease is WAY too sugar coated in the media, which only continues the prevelant myth that our disease is some sort of mild inconvience or some temporary condition that can be fixed with a few Advil….of course we all know that is far from reality….I have been wondering as well, just WHY does the myth continue? I believe there are many factors…firstly a huge public misconception about our disease itself that was present well before Biologics…I believe this is largely due to for some reason people cannot wrap their heads around a disease that has the word arthritis in it! WE need a name change…to make any head way at all….then the drug companies come along and advertise like they have a cure for RA…yes it is true they never claim to have a cure, but those viewing the ad think “but waiit..the people in the ads look so darn healthy and they look cured don’t they?” I suppose it would not benefit them financially to put people in the ads that still look sick! So, they stick to the young perky looking actors, to, fill the bill….which only continues to promote the myth our disease is not only just a nuisance but also curable…and of course no one knows or is told that RA can attact our vital organs and potentially kill us? Guess that would not be good for promoting their drugs…AND lastly I believe people do not like to talk about any condition without a cure or quick fix…combine that with the attitudes a out our disease and the drug company ads, and you have a recipe for public ignorance….
I have stopped arguing with people when I tell them I have RA. Of course the do the “Oh, I have that in my knee” I then ask them ” Oh, you have an autoimmune disease like AIDS without sexual transmission and not using drugs. I cannot tell you how many jaws have dropped to the floor on that one….I have had many start asking questions after I put it like that. They want to know why it’s called arthritis. So I try to explain as much as I can then tell them to come to this website if they really want to learn more about RA and what it actually does to a person. Some have and others haven’t. I am praying that it is helping some.
I have been waiting for time to respond to something on here, and this was perfect timing. I’ve not had the chance to breathe let alone write, but I read your blog…a lot, and sometimes it makes me frustrated, sometimes angry, sometimes sad – I will even cry…but sometimes there’s a little giggle. However this time I am down right peeved.
I called someone the other day and they said, “what’s your disability?” Well, I have an autoimmune disorder, and it has led to the breakdown of my overall immune system, but primarily I have Rheumatoid Arthritis. Her response was, “oh so you have arthritis?” It seethed right through me. I couldn’t even respond. I couldn’t even correct her, I was so angry. How do people NOT know or at least hear the difference of Rheumatoid Arthritis – and well…”just arthritis.” I only WISH I had arthritis. I only WISH I had SOMETHING with a face – like MS or CANCER – or hell – even AIDS, at least I’d know my fate, at least I’d know someone was walking for me – cause I barely can! :p Yeah – kinda figured someone needed a bwhaahaa…there. But if I say this out loud, people gasp in shock. “Oh you should be so lucky it’s ‘JUST arthritis.” Nope. No. I’m not. And it’s NOT ‘just ARTHRITIS.’
I remember when I was first diagnosed a few years ago. A friend gave me a can/jar/bottle opener, not the kind that is just a rubber grip but the kind with the oversized handles and it wraps around the product lid. I remember thinking – this is a gag gift. I’m only in my early 30’s. I’m never going to use this. But hey, a jar too tight – it might come in handy better than a towel, right?
Boy – did I not know what I was in for. I mean I knew my feet would bother me. They would swell, in places I didn’t even know I had. I would run a fever most of the time, during these little bouts, and that walking on them made me want to vomit. It was like having the flu in my feet, but it effected my whole body. No big deal really. Why did I need a jar opener?
Ha! That’s funny. There’s a little sugar for my cookie, right? Afterall, it’s just arthritis. Then I remember waking up and I couldn’t open my mouth. Literally. I’m sure there were people in my life that found this humerous. But I couldn’t open it barely enough to seperate my lips. By dinner time, I decided it was time to go to the E.R. – afterall it was only arthritis, arthritis couldn’t lock your jaw shut…I was sadly mistaken. They gave me several shots, that today I don’t remember what they were – all I know is I could walk out of the hospital. My jaw was still excruciately sore, but I could open it better. The doctor said, “Do you have Rhuematoid Arthritis?” I said why yes, yes I do, why do you ask? She said she had interned with a Rheumatologist and could tell by my CT Scan it was probably RA. I was confused but still – early thirties -didn’t really care. I was more in shock though, than denial – I didn’t really believe RA could do that to my body. I was just told it was just an autoimmune disorder form of arthritis. Just like the vitiligo I already had, or the Hoshimoto’s that had eaten away my thyroid…none of that had really been a problem I just took a pill is all, and the vitiligo made white patches spread on my skin…was more annoying and embarrassing than excruciatingly painful.
Now, I’m 35, it has left me with lungs of a smoker from scaring, but I’m not a smoker; the liver of an alcoholic, yet I don’t drink; and I walk like a 90 year old but I’m half that age. My doctor’s want to try steroids but others say no – because of chronic use is bad…I refuse pain medication because if I hurt this bad at 35, how will I feel at 45, or 55? I sleep in a hospital bed so I can releive the pressure off my joints to actually get sleep. but no – I don’t just have arthritis. I have RA. And now I only wish I had the physical strength to use my the gift of my jar opener that I once balked at. Try sprinkling some sugar on that.
Oh, the sugar coating. I’m so over the sugar coating. My physician sugar coats it in a very debilitating way, at least for me. I out and out asked her to tell me there was no hope this was going away, I needed to hear that. I needed to hear that because I am one of those people that CAN face things, as long as you tell me the facts. If you don’t, if you blarney me, you will get my heart to hoping and I will waste time and energy on that hope instead of using time and energy to fight the progress of this disease.
Do not feed me sugar coated rat poison. Tell me the truth. Tell me that remission does happen but is so rare the chances of it happening to me are pretty nonexistent. Do not belittle the effects of this disease. Don’t make me feel like I should treat this like something minor. It is not minor. My life before and my life after are two different things. Acknowledge that I must morn for my previous life because that woman is dead.
I am a warrior now, so give my armor and my weapons. Do not tell me I don’t need them, I do. I need the truths about this disease so I can educate. I need the weapons of my honesty and story so I can keep myself and my family safe. I need to know what to watch out for so I can protect myself.
I need to know that to be the best I can be, live the longest I can, I need to fight early and HARD. I need to know this will be a long battle. Give me resources and fellow battlers so I know I am not alone. Give me people to count on. Lead me to the online communities, do not dismiss or distrust them.
Do not sugar coat the battle of my life. Do not lie to me. Tell me the increased chances of death. Warn me that this disease is systematic. Help me care for and watch all the systems of my body. Do not neglect them and me when I speak to you about them. I am fighting a huge head on battle, do not weaken me with these side pot shots that take my energy, time and focus away from where it needs to be.
Get the facts, do not sugar coat this disease. Do not make my family, my neighbors, my friends, my coworkers think I am lazy or not doing enough since I am not living up to the ads. Educate! Let people know that my disease may take a myriad of courses.
Treat me with loving kindness, as if it was your daughter or your son with this disease. Treat me the way you would want to be treated, with respect.
Sugar coating isn’t something I want, need, or can afford.
I remain, respectfully yours,
a Warrior, Jennifer
Brava, Jennifer. Brava! We DO need to know. After all, it is OUR disease!
Jennifer,
I, too, share your experience with doctors. My doctor has sugar coated with blood tests, and SED rates and everything he can think of. Saying all is well…no worries. I have tried explaining to him this doesn’t work, and taking him research from “peer-reviewed” sources because that’s all he’ll take seriously.
In the meantime, I spin into a spiral of downward decline as well, watching who I used to be, fade into a memory. My friends and family, think it’s all a misdiagnosis – nothing could attack my body this fast (3 1/2 years) and make it decline so rapidly.
I was also a very active person. We lived in a 4th floor apartment. By the end of the 2nd year, I’d fallen down the stairs so many times and broken three bones. The orthopedic surgeon was so surprised when I had waited nearly 2 weeks to be treated for a buckle fracture of my right arm, because well – I thought the excruciating pain and bulging was from RA. I didn’t know any better. Just like the pain in my jaw. All of this was so new.
As the disease progressed, I began to understand I was never going to be the person I used to be…now it’s allowing others to learn to accept that, but also allowing myself time to do things.
A couple people posted on here about house cleaning. One had the luxury of hiring a house keeper, but could barely fit it in her budget. One cleaned her house to pay for it. I’m still at the point where it is so depressing that tasks that used to take me 5-10 minutes now take me 30 or 40 minutes.
It’s hard to accept, when no one else can accept it either. Like my daughter. I read her a post on here from a daughter’s perspective about her daughter always carrying her mom’s purse. It was just a given. Now – my daughter’s a teenager, she doesn’t want to sit back and make sure before she leaves there isn’t anything obscuring my path to major areas like the kitchen, bathroom, or bedroom, and of course living room. She doesn’t want to stop and make sure my shoes are within easy reach, that she didn’t accidentally kick them under the couch…let alone carry my purse. Sometimes I think my daughter gets punished for my disease as much as I do.
But we all plough on I guess, right? I think I use the military’s motto more than they do – “Pain is fear escaping from your soul.” I must have had a lot of fear to let escape! ;-p Cause I’m still letting go of it…even today!
Thanks Jennifer. I share in your frustrations. 😉
I just saw a new Enbrel commercial featuring our golfing “unfriend”. He was talking about joint pain while fist bumping and hand shaking with a crowd! Just watching him do that causes me pain!!!!!
I think the biggest sugarcoat comment I have received was on the two denial letters fro SSD stating that they didn’t see any reason why I couldn’t work, or why my job couldn’t be modified for me or why I couldnt get another job based on my records. You would think they knew RA pts by now and know the severe pain and inability to walk, stand or sit for long times. I’m still ticked off!! :-).
I often see RA in those “you & your health” articles. It’s often listed as an afterthought and called a “chronic inflammatory disease” and treated as a extreme version of osteoarthritis. Why does everyone shy away from the fact that is an autoimmune disease? Fear? I guess I am guilty of that myself, because the idea that I had something like that scared the heck out of me. But then the fear has motivated me to start seeking answers and taking a more active role in the management of my disease. Are these sugar-coaters afraid that telling the truth – the whole truth – will suddenly cause some sort of RA revolution?