“Dealing with RA Is So Much Easier than Lupus” –Kathy Lubbers
What causes the RA awareness problem?
Every day, people ask me, “What can I do to help create awareness for RA?” Many suggest, “We need to find a famous person with RA.” Maybe first, we need to think about why we need awareness for RA. Why do people have such a wrong view of Rheumatoid Arthritis? Where did the Grand Canyon come from that separates the real RA from conception of it that most people have? And why has it not helped at all there actually have been famous people with RA?
I’m not sure how to solve this mystery, but we need to. I would like to hear your ideas. If you blog about this, please leave a comment or a trackback so I can follow that. Here are some contributing factors I see.
- Articles on the internet giving bad information on RA.
- Bad choice of words to name the disease.
- The symptoms of RA are often invisible.
- RA can be confusing because the symptoms can vary by patient or over time in the same patient.
- Poor training of some doctors.
The other day, I had one of those moments of revelation when you get a glimpse of the way that things are seen from the outside: Into the Google search box I type “Rheumatoid Arthritis somethingorother” and results popped up. What? Newt Gingrich’s daughter has Rheumatoid Arthritis?
Click. Scroll. Sigh.
So what if Kathy Lubbers says she is “thrilled” she has Rheumatoid Arthritis instead of Lupus?
According to a story on Health.com, when Kathy Lubbers was diagnosed with Rheumatoid Arthritis, she says, “(I) talked to my new doctor about my lupus, he said, ‘Honey, you don’t have lupus, you have rheumatoid arthritis.’ I was thrilled! While painful, RA is an easier disease to deal with on a day-to-day basis.”
I don’t know if Kathy Lubbers said it exactly that way. I’ve been interviewed myself. As a matter of fact, I’ve been interviewed by Health.com. So, I know that things can sometimes read a bit differently than they were originally stated.
So what if this is the way RA is presented?
What effect do you think it has for people to read that someone is “thrilled to have RA”? It can’t be good, can it? So what if…
- A famous person gets RA and hides it, like Lucille Ball?
- Or Kathleen Turner was criticized widely for making glib comments about RA. In 2002, she and a doctor were interviewed: “Turner says she takes Celebrex with Minocycline. ‘Ms. Turner was quite sick and now she is doing quite well,’ reports Trentham. ‘The drugs she’s taking are good for her and aren’t so financially prohibitive.’” Turner is “more active than ever and she says, “I think they’ll find a cure in my lifetime…The earliest you can test for arthritis — do it. It’s just a simple blood test.”
- Phil Mickelson gets Psoriatic Arthritis and says, “So I’m not very concerned about it”?
- Deborah Norville, whose mother died as a result of Rheumatoid Arthritis, says that RA patients can benefit greatly from watching her videos because she thinks her mom would have benefitted greatly from knowing that eating blueberries could have reduced her inflammation.
- Or Camryn Manheim says you can just put RA “behind you and live a full and eventful life.” [Edit: this last point added Oct.17th after I re-located the link.]
But this is what the public reads about RA
How does this affect people who don’t know that RA is a serious disease affecting the whole body like Type 1 Diabetes? RA patients with poor functional status have a survival rate similar to stage IV Hodgkin’s lymphoma or coronary artery disease with 3 involved arteries.
According to the Centers for Disease Control, RA is more deadly than Lupus (by numbers of rheumatic disease deaths). In part, that is due to greater awareness and treatment for Lupus in recent decades. Lupus is rarer than RA, but more money is given to research for Lupus. I can’t use a single link to answer to the folly of RA being an “easier disease” to live with day by day, but it would be important to note there are varying degrees of RA.
This quote from Medscape about RA gives a clearer analysis: “RA does not usually follow a benign course. It is associated with significant morbidity, disability, and mortality. Daily living activities are impaired in most individuals with RA. Spontaneous clinical remission is uncommon (approximately 5-10%). After 5 years of disease, approximately 33% of patients are unable to work; after 10 years, approximately half have substantial functional disability. Poor prognostic factors include persistent synovitis, early erosive disease, extra-articular findings (including subcutaneous rheumatoid nodules), positive serum RF findings, family history of RA, male sex, and advanced age. Life expectancy in patients with RA is shortened…”
Postblog: This is not about a contest between RA & Lupus
I want to be clear. I don’t want to argue about whether Lupus is a terrible disease or not. This discussion is about the way RA is presented to the public. So, let’s assume the following:
- Of course there are degrees of Lupus and there are degrees of Rheumatoid Arthritis.
- Of course we would all rather have neither.
- Of course we are not in a contest with any kind of patients. There is nothing to win.
I’ve been reporting for a year and a half on the minimizing of Rheumatoid Arthritis pain and inaccurate reporting about RA. It doesn’t look like celebs are going to bail us out. Today, I’m going to go through the blog and adding an RA awareness tag to the posts relating to this.
What do you think? Do you think the way RA is presented in the Lubbers article or others affects public perception? I know one blog – or even lots of blogs – won’t solve this problem, but if we can figure out where the Grand Canyon is, maybe we can build a bridge.
- “25 Years in Arthritis” – an Article on Rheumatoid Arthritis by ABC News
- To Tell the Truth: Will the Real Rheumatoid Arthritis Please Stand Up?
- Rheumatoid Arthritis Statistics
- Rheumatoid Arthritis Disease May Be the Scarlet RA
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Great post and I don’t have RA or lupus. Well said!
Kelly, You are so right. It is all in the presentation. For some strange reason or another, the media, celebrities and even the Arthritis Foundation itself present Rheumatoid Arthritis as ‘arthritis” and easily treatable. The drug companies are to blame as well. They air commercials showing the RA’er skipping along toward a carousel, or canning fruits and vegetables!!! All with ease. Just yesterday the Arthritis Foundation posted on Facebook, a video a young boy created for arthritis awareness. Albiet, I was proud to see a young boy take heart and create a wonderful video on awareness and i did him him applause for this. I did however, let the Arthritis Foundation know, that NOT all arthritis conditions were better from “movement”. it this because of these misconceptions that we are not taken seriously. Rather, we are made to feel weak, Oh, you have arthritis? My grandma has that!One way to create awareness is to get the Arthritis Foundation and the Drug companies to publicly portray the “Real Rheumatoid Arthritis”. The AF is so powerful, until they stop conceiving the public, we have a long road toward awareness.
Thanks for all you do. I have had this horrible disease for 10 years, and YOU have opened my eyes and enlightened me so much! Until I found your website, I truly thought I was crazy. I had no one to compare with, and now….my complaints and RA issues have been validated.
If anyone can create awareness, it will be Kelly Young, The RA Warrior! :rose:
You are not crazy of course & I’m so glad you are sure now. 😀
Skipping along… yes, haha.
I believe it will be all of us together that will create awareness. You did great to let them know how you feel. They really believe they are right! It will take all of us to show they are not. But we can’t change our minds as I always say, because “RA won’t let us.” The facts that we live with are reality. It doesn’t matter who else denies it; even if we want to, we can’t.
Hi Kelly, I just did a little copy and paste of your blog to my fb page. Hope you don’t mind. I figure if even one person actually READS it and THINKS about it for a couple of seconds then awareness is improved.
I still remember being on the ‘blissfully unaware’ side of the RA tracks. I knew my Aunt had RA and I thought that meant HER HANDS WERE A BIT STIFF AND ACHED SOMETIMES. I never knew…I NEVER KNEW.
Did I know about the horrors of Leprosy? Yes. Cancer? Yes. Diabetes type I? Yes. I even knew how Tetanus progressed if a person wasn’t immunized.
Most of the general public have an intense fascination with diseases that cause weird deformities of require strange treatment (think of rabies and all the shots in your stomach, or the elephant man). One thing RA can do is cause deformity. If I had seen the classic x-rays of deformed RA hands BEFORE I knew what it was about I would have paid attention, I would have learned of the horrors my Aunt has gone through for over 30 years.
Maybe these kinds of horrific RA damage pictures are what we need to get out to the public. We need a good lure to hook them, then reel them in and let them learn.
Some of you may think there is a gentler approach but I don’t. People are people and if you want attention you have to stand out.
It would be nice to get a group of pics going here. I’d start posting them, just one a day, on my fb page, maybe with luring little captions like “do you have this disease and don’t even know it?” I think I’d get some nibbles for sure.
I’m working on an awareness tool that uses photos. That’s why I asked FB members to post them for me to use for that. So, yes. I agree there will be those who are reached by pictures – both mild & severe to show “you don’t look sick” is meaningless with RA. It does my heart so good to see so many of us owning this mission together. We can’t lose :heart:
Great post Kelly!
My paternal grandmother died young as a result of RA. My dad and his siblings had to problems with RA, but I was diagnosed about 3-4 years ago. My sister has lupus, my cousin (my age) has RA, and my brother has a an immune disorder that primarily affects his hands (can’t think of the name of it now).
Bottom line, we are all facing tough issues and situations – none is better than the other. I agree that RA needs better public support, and a stronger case for research support. Not sure how to go about that, but if you come up with something, I’ll back you 100%.
So glad to hear from you, Dan. I hope your adventures are going well. Have you had a look at the 3 posts from last week on RA Awareness? I think we may be reaching a critical mass. I get a lot of email about this & I’m working on ways we can get ourselves together to act on some of the great ideas folks have to make the public case for RA. It’s great to hear you will be part of it.
Unrelated: Have you attended any conventions? I’m going to my 1st big one in couple weeks ACR. Looking for all advice.
I’ve attended a number of large conventions and conferences (all pre-RA). The large ones usually require some planning to make the best use of your time. So make a plan. Some conferences now have mobile apps for the program so you might look into that if you have a smartphone. I don’t know what the ACR meeting is like but invited talks are usually better than contributed talks. Try to attend any large “keynote” type of sessions. Poster sessions are also quite useful as you can talk with the person that did the research one on one. The bad thing about poster sessions is that they require a lot of time on your feet. Panel discussions are also interesting depending on the topic and the panel members. Sometimes you can see some fireworks and/or insight from multiple viewpoints.
I wish you all the strength and endurance you’ll need to get through it. Good luck at the conference. Have fun!
Thank you for any advice. I’ve planned to attend for a year. Now it seems too daunting. Working on itinerary I just shake me head. Lessened ability does not mix well w/ increased responsiblity. ha. Do I need to inquire ahead of time for “invited talks” – that’s not clear?
I don’t know how ACR runs their meetings or if they even have a desination of invited vs. contributed. The designation only relates to the presenter not the attendee. You should be able walk in and sit down to just about any session. Contributed talks are usually given by graduate students or people trying pad their CV. Invited talks are usually given by people that are known to be very knowledgeable or experts on a particular topic and were asked by the conference to present.
When I make my plan for a conference I have 3 buckets for talks: must see, nice to see, attend if I have nothing else to do.
I have had a diagnosis of RA for many years and just recently, based on new lab findings and skin biopsies, was also diagnosed with Lupus. I am angry about BOTH of them. These diseases are robbing me of my life on so many levels.
What is the point of Lubbers’ comparison of the two diseases that both have similar issues and root causes? Why not put the emphasis on finding a solution for both of them. We are not in a competition to see who is sickest. We NEED a cure.
As for the public perception, I totally agree with you Kelly, and with Cindy. I am so FRUSTRATED with being seen as weak and a hypochondriac because people do not understand. If they did, they would see that we really are the toughest warriors around to be able to deal with this pain and feeling so sick every single day.
The Arthritis Foundation does some good things. However, their own magazine, Arthritis Today, always has a cover story of some cheery wonderful person who is a dancer or a star athlete of some sort. I have written to them about this. This is NOT the way most of us RA sufferers in the REAL world live. Reading these stories makes me feel worse about myself as though if I just somehow tried harder, I too could be a marathon runner despite my knee replacements etc. The Arthritis Foundation Mission Statement in part says: “The Arthritis Foundation aims to increase public awareness of arthritis as the most common cause of disability…” Perhaps we should band together and ask them to fulfill this part of their mission statement. The reason breast cancer, heart disease, diabetes etc. get so much funding is the awareness campaigns. Our foundation, which I financially support, needs to get the message out for us. We as individuals are too small. We need a big voice to step up to the plate for us.
I agree with you that we need a voice Joy. It’s the patient’s voice that needs to be heard. The AF has not been that. I’ve heard from many people who’ve tried to get that through to them. If you have any success with them doing that, please let me know about it.
I’ve read thru their mission statement too – do you think they do promote awareness for “arthritis” though, but not RA? I’m not sure why we need awareness for “arthritis” since everyone has it or gets it eventually. But for RA, we do. Did you already read the long lists of comments on the 3 recent RA Awareness posts? This is a hot topic & I’m glad you are so involved. We need every one of us to do this. LIke you said, alone we are too small.
People seem to respond to visualizations. As the person above said, pictures of deformities. Who can forget the commercial years ago about drugs with the egg and frying pan. “This is your brain, this is your brain on drugs”. We need a “these are your joints. These are your joints with RA” campaign.
Celebrities are great, but at least with RA they all seem to go along the party line. They have one treatment and everything is golden again. Until there is one that will say I have RA and it will cause me to leave my chosen profession, the impression is RA is a simple thing to deal with. No one will understand the criticality of treating RA until a celebrity dies not from heart failure, but by heart failure due to the inflamation brought on by RA.
Unfortunately, when people die of RA, it’s seldom on the death certificate. The “secondary” diagnosis brought on by RA is usually listed as cause of death.
Great PSA campaign idea, Janet!
I wonder whether celebs are trying to preserve their careers. I know I’m private about symptoms in my own circle – imagine if I were famous- I’d do that too. I might be very tempted to say, “Oh, I’m ok.” Most of the time, I avoid answering “how are you” becuase I want to avoid eye rolls if I say how it is… Maybe we can bring awareness a little 1st & then give celebs permission to say the truth. ?
I think that many of us downplay the how are you question. I think its a combination of thinking that they don’t really want to know about my pains and that if the pain is about the same as usual I’m fine.
yes, & my mind was just wandering to how that might be magnified if you are a celeb too.
Kelly I wished i was well versed as the rest of you. But im not! RA has robbed me of that! I know of an famous person with ra…but cant remember her last name..Kathern The woman from the movie Romacing the stone! Seen her on Today show telling of her ra and all her joint replacements..dont know if this will help but i wanted to try..Thanks again Kelly
Thanks, Judith. Yes, that was the lady I mentioned in the story and the other comments here, Kathleen Turner.
I just read the Lubbers’ article. What a joke. I was surprised there weren’t any comments about it! I left one!!! Joy, what you said about the covers of AF magazines and “if I somehow just tried harder”…this spoke to me deeply. I’ve been having those thoughts. If I somehow tried harder, I could work. If I somehow tried harder, people would respect me as living with this disease, not look down on me as though I am lazy. And on and on.
I also think the photo suggestion is genius. People won’t stop to read about a car accident in a newspaper, but they will back traffic up for miles to get a glimpse of the horror of a wreck. It seems to be human nature.
Raini, I don’t think these sites have a lot of traffic so maybe that’s why. I wonder if anyone will read your comment. Let us know if you get a reply.
Reading this post and the older one about hiding one’s RA has brought me to tears. I have a lot of the same responses from people, comparing it to osteoarthritis in 1 or 2 of their joints, telling me to lose weight and exercise, not knowing that often I’m in such agony that the very thought of walking on my feet makes me cringe. Yet those same people will moan the loudest if they get tendonitis, a sprained ankle, etc. I wish they could understand for just one day what it’s like to feel like my hands are on fire or to have constant tendonitis/bursitis/tendonopathy in multiple joints or to awaken in a horrific flare that makes seemingly every joint in the body feel sprained or broken, and when I wonder how I’ll even manage to hobble screaming to the restroom.
I’ve got a sweet, older sister with lupus, and she certainly has never treated me as if my disease was less severe than hers. In fact, she is doing a lot better than I right now–has been in remission a long time. She’s probably one of the few people in my life who “get it,” but she lives a long way from here. I think some people feel like they have to minimize others’ pain in order to magnify their own? Others are just ignorant. The saddest thing I face is that the people in my own immediate household are often judgmental and critical of my inability to be and do all that I once was and did. I’ve tried to give them information, but they don’t seem to want to be informed. I have to drive alone over 300 miles round trip for every doctor appointment, which is a grueling event most times. I try to put myself in their shoes, and understand that my RA and other conditions have turned their lives topsy turvy also. So many times, I feel as if my husband is angry at me rather than at the disease that has taken away the woman he knew and loved, and my teens are embarrassed that their mother is unable to do what other moms do with such ease. Often I push myself way beyond my limits in an effort to please them–to keep the approval of those that matter most and also to avoid the disapproval of strangers who don’t understand my limitations. I have a lot of anxiety facing a possible future of disability and diminished capacity living with someone who I fear will not treat me well if my condition worsens.
Thank you – that is so well stated. I feel sure you are giving voice to many others. I identified with a lot you said.
I wish someone could drive you to the doc. My daughter drives me almost everywhere now. Guess that’s why I’ve not written about how much driving hurts recently. Haha.
It is such a blessing to read about how your children help you and try to understand how difficult it is to merely function at times. They seem like very sweet souls! I wonder at times if it will be people like them who devote themselves to the research it will take to find prevention, better treatments, or a cure for RA spectrum disorders.
What a wonderful idea, Sunny. 🙂
I wrote over on the FB side that the “thrill” of RA is more like the video of “Thriller”…thinking about that and some of the comments left above about PSA’s and awareness, maybe we should do our own warrior video of “Thriller” except we don’t have to dress up, just be ourselves in pain! LOL In all seriousness, I have run into this so many times as you all do and have tried my darndess to get people to understand WHAT RA IS! Some get and some don’t….and yes, it doesn’t help with AF, AT mag and even the ACR attributing last Tuesday to “World Arthritis Awareness Day” in reference towards OA….why don’t they just call it what it is! I applaud all of you warriors out there as we fight not only with our own diseased and hurting bodies but the general public! Thanks again Kelly! :-/
I read Kathleen Turner’s book. She does tell that she has RA and how it effected her life. But she didn’t tell about her doctors or drugs they tried. She said drinking helped her! I know that her book was about her life and not a book calling for attention, but damn. The fact that she has RA is the only reason I bought the book. It was around the time I was diagnosed and I live in a very small seasonal area. I was looking for help and advice and thought she would help. I was expecting something different!!Thanks for listening!
Sounds like you were disappointed. Do you think it helps or hurts the RA Awareness problem?
I believe from the perspective of someone who has both Lupus & RA the worst thing a person can do is downplay another just becasue they don’t happen to be having a hell of time controlling it.
MY CPK’s have been so high for over a year now. I’ve been on 4/5ths’ of the big guns now for treatment. They have all failed. If you want accurate publicity, you take the worse case patient AND the best case patient and put them BOTH in an article.
As I recall Mickelson was concerned when asked about it on the PGA tour. He did become a voice for it for about 48 hours until the match was over. That hurts us more than helps us. Turner, she has always rubbed me the wrong way, period so her word no doubt has confused others.
No good study, article or conversation will happen until all three sides are covered. Remission, active flare & flares non stop. JMHO
This might not be popular, but it is true. I’ve had Crohn’s disease (an autoimmune disease) since I was a young teenager. Once when I was hospitalized, they thought I had a tumor. I was actually relieved, because it would either be removed, or be cancerous, but either way I knew that this was something that was more widely understood, that people were more supportive of, and that had more resources going toward finding a cure/treatments. I would never say “I would be happy to have cancer!” But I do personally believe that it would be easier to have a more publicly acceptable illness. So I can sorta see where the “Thank goodness it’s RA and Lupus!” type comment is coming from.
Today I went shopping for a dress for my son’s wedding with a woman who has been a dear friend for almost a decade. (I’m posting here, instead of on FB because I don’t want to hurt her feelings.) She is a kind and compassionate person. We supported each other through the deaths of my mother from breast cancer and her mother from ovarian cancer. But RA has changed our relationship. No matter how I try to explain things to her, she doesn’t “get it.” I’d let her know beforehand that I’d been having a rough week: RA fevers, flare, bad GI problems (from the meds? food allergies? who knows?), and only got 3 1/2 hours sleep last night due to pain. And yet, in just a few hours–1) She suggested that I “not think about it (RA) all the time”. 2) She asked me if I didn’t think exercise was particularly important for me–even though I do aquatic therapy about 3 times a week. And 3) When I was disappointed to discover that my bunions–which didn’t hurt prior to RA–are now tender when I wear even flat dressy shoes, she said I shouldn’t consider it “another loss” because she won’t buy shoes that hurt her feet either.
Normally I don’t get too worked up about other people’s responses to my disease any more because I know that I have been dismissive of other people’s experiences due to ingnorance and I want the relationships to win out. However, it was that even after a year since my diagnosis, this otherwise loving friend says things that minimize my experience.
I can’t help but think that this is rooted in the general lack of awareness about RA and related diseases. If I had cancer–our mothers’ experiences with it aside–would she treat me the same way? Would she say don’t think about it and exercise more? I’m not sure what to do yet. A decade of friendship no small thing. At the same time, it is painful to have someone who loves you imply that you are not living your life as well as you can.
At the same time, the scariest thing for me is how lack of awareness can actually threaten our lives and well being when it leads to lack of research, inconsistent treatment, and inequity in health care access.
Kris, that was as good as another blog post! You are so right on the money.
I’m so blessed with 1 friend who is the exact opposite. She came with me on my NJ trip this week – But it took her a lot of time & work (reading my blog among other things) to understand RA the way she does & become such an adovocate for me/us. I think your friend should read your blog & mine until she gets it!! Gee, do you think she will take my advice? LOL. Just kidding, Kris. I know this must hurt you a lot. Hopefully you can ride this storm & come thru the other side with the support of those who get do it. I have family members who are that way to me too so I know its hard.
OK, here’s my pledge after my intro:
I am a working actress who has RA. I’ve had 6 operations on my spine to keep me walking. My feet are deformed and I have RA throughout my body. There isn’t a joint that has not been affected. When I can, I’m still working as an actress. Fortunately, no one has discovered what I go through on set. My mind set is now different. It will no longer be a secret.
My pledge to everyone: At the moment in time that I become famous (hopefully), it will be my goal to inform the world about the Real RA. Hopefully I can accomplish this before it wins out over me. I’m 63. Everyone keep fingers or whatever isn’t hurting at the moment crossed for me!
Trish, I’m so moved by your post. I’ll definitely pray you are famous & well as possible. 🙂
Ok if I email you about an idea? Your email is here already – I just don’t usually use them.
Like the others, I get sick and tired of the confusion of what people perceive what RA is and the silent disability. Even my rheumy gets persnickety with my aches and pains. He says I’m one of the few that is resistant to medication. I’ve been dealing with a mountain to climb when it comes to my own education and dealing with coming to terms with RA and the denial that even those closest to me are reacting with. If my husband can’t even deal with it, how do we expect the general public to accept it. Luckily, I work in health care and there are co-workers who get it. Funny tho’, that even there are RN’s that don’t even understand the horrible meds we take and the pain and side effects we deal with. Thank God for your website and *ANY* info on the internet that we can find (as long as it is reputable). I’m tired of the “blueberry cure” or the magnet cure, or the thought that if I weighed 100 pounds or exercised more (water aerobics hurts my wrists! and walking hurts my hips). I’m trying but I block out a lot of it. I just wish there was more compassion!
He is wrong. “the few that are resistant to medication” – I guess I’ll write a blog soon about it – the stats are quite varied, but even a good response is often a 20% or 50% improvement. How good is that? It depends on the patient… Maybe with RA Awareness, the compassion will someday also come. :heart:
I agree with you Beth about even co-workers in the healthcare field not understanding. I am an RN & I have been lucky to be able to continue working, att a loss to my personal life. I have been advised by my Rheumatologiist to keep my diagnosis a secret as long as I can, as he has had patients who have been discriminated against soon after their”secret” was out. I usually work through the pain, but recently I sprained my wrist at work & was supposed to have been on lifting restrictions, good luck with tha I found out. I did tell a few other nurses at my previous job, only to be met with disappointing responses, such as,”Oh, I have that in my left knee”, “You should avoid gluten, as that helped my grandmother with her RA.”, and “I can give you the name of a great personal trainer” (followed by comments about how weight affects joints & how this trainer pushed her to loose weitht quickly). I was so disappointed in my fellow nurses, after keeping my secret for so long to find out that even these professional nurses didn’t understand that OA & RA are very different.
This discovery has made me question sharing my disease or if I should try to find a way to advocate for myself with my fellow RA warriors.
The Lubbers article was very confusing to me. The easier then lupus comment is very detremental to RA awareness. Yet, the article mentions how taking 2 steps was to many some days, and the horrible chronic pain.
I agree, Tanya. I read it a few times. I can only guess that Kathy responded very well to treatment & the author seems to imply that that is universal. Of course as a nurse & patient, you know it’s not. But readers could be misled.
It always gets me how folks who say RA is no big deal so go on and get up & go running… also had that moment of agony when they couldn’t walk. I always want to say, “What IF you didn’t respond to treatment & stayed in that spot?” I’d like them to realize there are many who don’t respond to treatment as well & wish no one would assume things about others’ symptoms. Ok, soapbox away now..
On a similar note, it’s concerning that an AF board member (which Kathy says she is) would say she “conquered” RA. That implies a cure. I hope that was just something lost in translation when the article was written. The sad reality is that Kathy’s response to the biologic could end at any time. This disease doesn’t go away. At best, you keep it tied up in the basement.
I’m not sure what to say, Kris. Things like that I read from AF make me shake my head. I wonder what they think of our viewpoint?
My mother had lupus and I have RA. My wife Roxanne was very close to my mom. After reading Kelly’s post I asked Rox if my RA is as bad as mom’s lupus. She she said “No you’re doing much worse that she was”.
I have RA and one of my best friends has Lupus. We never compare who is worse off or anything like that. If anything, she is one of the only people who “gets it”.
I am an academic. I used to teach at a college where the Dean called me in to complain about my number of absences in the winter months. When I explained it was the cold weather that affects the RA, his response was, “Can’t you just take an Advil?”
I am truly lucky that I have a spouse, RA doc, friends and boss who do “get it”. I try not to waste my time on those who don’t. You can’t fix stupid.
“Can’t fix stupid.” Good one.
I am so sad about Barbara Billingsley…but did you notice that in all the reports about her death they call it “Rheumatoid Disease” ? Few reports, like this one, actually explain. Sad day, but a helpful step toward some ‘awareness’ http://www.allvoices.com/contributed-news/7044188-barbara-billingsley-dies-at-the-age-of-94
Hi yes, I just posted a similar link on Facebook. http://www.tvsquad.com/2010/10/16/barbara-billingsley-leave-it-to-beaver-mom-dead-at-94/
It says she had pmr or polymyalgia rheumatica which is a rheum diagnosis commonly given to the elderly w/ shoulder & hip symptoms similar to RA. The article says it caused her death. That dx seems to be given to some patients who actually have RA or giant cell arteritis (another disease). It seems its not all well understood yet, but don’t we wish we could learn more of what happened to her? Maybe they are saying Rheumatoid Disease because it’s unclear which disease she had?
Funny, before I was diagnosed I was scared the doctors were going to tell me I had bone cancer. i was 21 at the time and thought everyone with bone cancer just dropped dead. When they told me it was RA I was so relieved…funny thing is, they discovered a rare bone cancer in my dad’s lungs awhile back and removed it and can’t find it anywhere…so I guess his few months of pain and surgery was less than my 12 years of RA!
So…the pain this Kathy Lubbers lived/lives with is easier now because it was renamed and correctly diagnosed??? WTH?? I guess she is magically all better now since it’s RA and not Lupus. What a boob.
Funny. This week, I was given a bronchoscopy to examine my lungs – I’ve been having difficulties and both the rheumatologist and the pulmonologist are thinking the RA may be attacking my lungs. Anyway – more to the point, the nurse in endoscopy, who was preparing me for the procedure knew absolutely NOTHING about RA, and I mean nothing. I couldn’t believe how ignorant she was about it (but she was curious and asked me lots of questions). Then, I go for x-rays, and there is the x-ray technician – someone I wouldn’t think would know anything about it and she seemed to know everything. She mentioned to me that RA can be every bit as nasty as Lupus when it attacks organs likes lungs, etc.
At least the nurse was curious! I think maybe since Lupus has had so much “awareness” educating the last decade or so, it has a reputation for being a more serious illness even though RA is more deadly by the cold numbers. I’ve always wished that the nurses & techs had some kind of RA awareness training since they can be so rough with patients. What a difference it makes when they know what RA is.
You know, as weird as it sounds, I felt relieved to hear the x-ray technician say that. A co-worker of mine was really upset that she would say something like that to me, and while I appreciate her concern that maybe that would have upset me, it didn’t. When the x-ray technician said that, I thought, “well, here’s a person who gets it”. I appreciated her candor and understanding of what is probably going on with me. I do get VERY weary of doctors not telling me things. I WANT to know what’s going on!
No one should equate one disease with another. First of all getting news from a physician that you have a painful, debilitating disease is hard enough to swallow without someone else telling you that they are dealing with a much worse disease than that……
Everyone is different, that’s what makes the world go round. No one is going to handle the news of having a disease easily.
There are different stages of RA. People progress differently. People handle medications differently. Some have more complicated issues, whereas medications aren’t working the way they should or the RA is progressing more rapidly than thought.
I don’t believe those biologic medicines on TV are doing any of us any good. I don’t know of one person who has taken a biologic and slipped on an evening dress and went out on the town.
Do you know I use to walk at an extremely fast pace, practically no one could keep up with me. Now people have to stop and wait for me to catch up. My home was spotless while working a 40hr week and cooking dinner when I got home from work. Now I am lucky if I do 2 loads a laundry without suffering from pure exhaustion.
BASICALLY MY LIFE AS I KNEW IT IS OVER!! ALONG WITH DAILY PAIN I ALSO HAVE TO COME TO TERMS WITH THE FACT I WILL NEVER BE THE SAME PERSON I WAS. THESE ARE SUPPOSE TO BE THE YEARS WHERE I AM ENJOYING LIFE, TAKING TRIPS, AND MOST OF ALL HAVING FUN! I HAVE ABSOLUTELY NO SOCIAL LIFE. I DON’T HAVE THE ENERGY OR DESIRE TO BE AROUND PEOPLE.
THANK GOODNESS FOR RA WARRIOR!!!
Hi there Sheila. :heart:
Those things you said are just what I told so many people this week at ACR. Even those who do “respond” don’t get their old life back. Thank goodness for you too. It would be no fun at all here alone. 😉
Sheila – wow, I can feel how upset you are and while I’m nowhere near the point you are now, your words echo my very thoughts about my future. Sounds like you are the kind of person I am – in fact, as my husband & I just walked over to the winery across the street tonight, he mentioned how fast I’ve always walked and I said, “it probably won’t always be this way soon”. I used to be a fireball too – full time job, come home and clean and cook dinner and do a couple loads of laundry, take care of my cats — all that, but now, have really been suffering from exhaustion by the time I get home from work and a lot of that has really fallen by the wayside. As I said, your words are my exact thoughts for my future. I feel your anger and your pain in those typed words. I’m not a “huggy” person at all, but sending cyber hugs to ya anyway. 🙂
Nice post, Kelly & for a good cause too.
I happened to see a RAer just a few days back. A 30 yrs young lady having RA since 7 years. She was already crippled by the time she saw me. Just a look at her lifestory.. gave up her college due to RA; unmarried & given up the hope of a family…all due to RA. Then.. I realised one more shocking fact. She lives in the metropolise of Mumbai.
Till date, she was never seen by a Rheumatologist, Shame on me as I have not been able to raise awareness about RA, shame of her family physicians as nobody has referred her to a Rheumatologist for such a long time. Shame on the sociey as she has been rendered a crippled life at such a young age; something that could have been prevented.
As compared to diabetes, cardiovascular diseases, we have not been able to raise awareness about RA/ other autoimmune diseases. The best way, I feel to go forward is the theme ‘Let’s move together’ started by EULAR. Not just the Rheumatologist but even the RAers & their relatives should take on this task of increasing the awarenss about RA.
I would post a detail blogpost on my blog (http://doctorakerkar.wordpress.com/) soon as a part of the RA awareness blog carnival.
Dr. Akerkar, I read your post with tears in my eyes. This week at ACR I had some wonderful discussions with good people who want to help us change this, so I’m hopeful. Your blog also is an important example and I’ll be honored that you’ll participate in our first Rheum Carnival which has barely been announced. When your post is finished, please email the link to kelly @ rawarrior.com with subject line Rheum Carnival so I do not miss it!
I read all these posts that echo the same frustration that I feel every time I encounter someone with whom I share my condition. I get the same reaction, time and time again, and the sad part is that most of the people I discuss my RA with are medical practitioners, usually physical therapists like myself. If the MEDICAL world cannot appreciate the severity and lifetime implications of this disease, how can we expect the public to understand?
The answer is that we must start with educating the medical community, specifically those who do NOT deal with RA on a daily basis such as primary care physicians and nurses and PTs. Not one single PT that I know understands how to approach exercise for someone with RA or how to manage pain or fatigue. They stumble with answers but they don’t have the experience or exposure to learning. In the American Physical Therapy Association we have sections for different categories of interest and special interest groups within sections for those areas that have a more intense focus within that section. Needless to say, there is no “auto-immune” section or SIG and certainly nothing on RA. In our annual conferences, RA is never a topic covered despite the fact that over 2.5 million Americans suffer from it. This is a tell-tale symptom of our problem.
Until we come up with a way to reach the professionals, we have no way to reach the public. The Orthopedic Section of the APTA has a newsletter type publication sent out monthly called “Osteo-blast” and maybe what we need to do is create one of our own to send to MDs and other medical professionals to educate them and provide them with learning opportunities.
Using a designated publication will reach so many that are missing so much about our RA. We can send up an “RA Flare” to catch the attention of people and hopefully, start the process of changing minds and changing our future.
Mary Taylor, PT DPT
Thanks for sharing your great ideas. I was happy to read your comments. Last week at the American College of Rheumatology meeting, I said very similar things to some people I talked with. I don’t know how much of this blog you’ve read here on the site, but you might want to check the “awareness” tag in the tags list if that is a conversation you are especially interested in.
If you’d like to email me about any ideas you have about how to get a foot in the door with the publications you mentioned, please do. I’m willing to speak or write for anyone who will listen. I have some other ideas if you’d like to talk about it more.
I remember, really clearly, being excited when I found out I had psoriatic arthritis not lupus. My understanding was that this was just joint pain and all I needed was some pain killers and I would be fine. I didn’t realise the impact this would have on my life. I didn’t realise this could effect my whole body, not just my joints.
I understand now, but I feel like I sometimes people do think that lupus is worse, or RA is worse. I know it’s not a competition, but I hate having to justify myself just because the perception is that my diagnosis means my symptoms aren’t as bad as theirs.
My cousin has lupus and while her symptoms have been bad, they are better controlled than mine. My uncle basically told me that since lupus is worse and my cousin works full time, I should be able to as well.
Sorry for the rant and thank you for this post. It’s been very helpful 🙂 Hx
Oh that was not much of a rant, Helen! 😉 Especially condsidering what was said to you. What baloney. There are degrees of all of these & very little awareness for RA / PsA. We shall try to change that – you should not have to justify yourself on top of manage the disease.
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Sorry, I have both RD (Rheumatoid Disease) and Lupus. The Lupus is eating away at my muscles. I think Lupus is worse. CPK and Anti DNA are high now also. If you don’t have it, you don’t know it. AWARENESS!!!! I know the difference between both, they both are ending my life. If I had to pick one or the other disease, I wouldn’t pick one at all.
I wanted to post here as a couple of days ago I watched about 10 minutes of an interview given by Kathleen Turner. I can’t remember who interviewed her. It was shown on Austar (Australia’s version of Sky).
I had obviously forgotten that she was mentioned in this particular blog. However, in the first few minutes of this program it all came rushing back to me. There she sat with her glass of alcohol in hand and when the interviewer said something along the lines of ‘So you were diagnosed with Rheumatoid Arthritis and you started drinking more around this time but someone gave you the most important advice that has really put this illness on hold’ – to which she made swimming movements with her arms and said ‘ Yes whatever you do keep moving’. I’d seen enough!!
I’ll pre-empt my next comment by saying, whilst I have not drunk alcohol in about 20 years, I’ve done my fair share of partying in my youth.
I would hazard a guess that for Kathleen Turner, much of her illness is medicated by apparent heavy indulgence of alcohol (of course that is not a very smart approach – but each to their own) and if all she needs is a ‘bit of movement’ to control or manage her RA – then I’m pleased for her.
However, after seeing that nonsense on TV for myself, it’s little wonder that us normal people have such difficulty being taken seriously.
I may be pre-judging as I turned it off immediately. I don’t need to see some so called celebrity minimising the awfulness that is RA.
I know this topic is a little old now, but I was compelled to post. Shame on those whose ignorance makes RA look like ‘a walk in the park’ – If only it were and if only we could – just walk in the park :pissedoff:
Excellent comment worthy to be read as a blog on its own!
You are not posting late. I think this is an important discussion. I’ve read 3 different interviews with Kathleen Turner and that is the same impression. There are a number of “stars” who’ve taken this approach to RA, possibly preserving their careers as others have pointed out. For whatever reason, I’ve concluded that they won’t be rescuing us any time soon.
I know that many times i have downplayed my RA. Not because I did not have extreme pain or anything like that, but because of my jedi-mind trick I occassionally play with myself. You see, sometimes I think that if I pretend I don’t have RA, or it is not as bad as it is, maybe my body will also think this. Also, by sometimes having this attitude, it becomes easier for my family and friends, because then they don’t have to deal with my illness.
I just want to thank you for this site. I was dx last month with RF positive RA. The month before that I was RF negative. Funny how fast things change. I have learned a lot about RA from you and really appreciate all the work you put into that. It must not be easy with all the pain and side effects of the meds. I tried Plaquenil but am allergic to sulfa drugs and did not know it had it in it. Tried mtx 2 weeks ago and I could tell my liver enzymes shot up and I had pain where my pancreas was. Doc told me not to take it until my blood work comes back. I have had liver problems for a long time and finally had a normal reading until now. I just hope I can find something that works. I noticed that my hands and feet are starting to swell now. Anyway, about the article on RA and Lupus, I know and knew people with lupus. They are able to work and even though they have their bad days they pretty much do ok. I have a friend that was dx in high school and is now 44 and she is still working full time and seems to do fine most of the time. I have a cousin with RA and she was bed ridden until she got onto the infusions. Oh and she is RF negative. They found out she has homocromatosis. (high iron that the body can’t get rid of) but because of not being dx soon enough cannot have her blood removed now on a weekly basis. Her sister did catch it and they said her arthritis and diabetis will go away once they remove the high concentrations. She has tested RF negative. So am wondering if people who are RF negative actually have high concentrations of iron and their liver cannot process it. It is a thought. Anyway, thanks again for your awesome work on here.
My daughter (27 yrs) was just diagnosed with RA…10 weeks after the birth of her 1st child. She’s handling the news fairly well. She has her first RA doctor appt on Monday. She’s just been on Vicodin and Prednisone until that appt. I found your website and am very impressed with all the articles and topics you have written, listed or linked too. This will help us immensely.
Keep up the good work!
The question was why we and the public have such an inaccurate perception of RA. I went to my rheumy today. The waiting room is full of “RA Awareness” booklets, all published it seems by pharmaceutical companies. All of them show pictures of healthy active women – working, gardening, playing with the dog. All appear to have oodles of energy and joie de vivre, while I am sitting in my doctor’s office wondering if I have the energy to simply keep breathing. Perhaps the drug company ads are what most folks see and, therefore, assume RA allows for the same full life we had before? … I would also bet that over half the folks out there (non-RAers) don’t really know the difference between RA and OA and therefore make assumptions that we are just talking about a bit of stiffness in some joints.
I’m sure that most people don’t know the difference between RA and OA, even though I explain it at the drop of a hat to anyone who will listen. I think some of it is human nature, not to take an interest in something that doesn’t directly affect you. Beverly, bless your heart, I have both RA and OA, and the OA has caused me to have 4 surgeries, with more to come. OA isn’t just stiffness in some joints, and most people don’t know that OA has flares. For those of us with both OA and RA the flares usually coincide. However, the OA isn’t attacking my heart.
I think the lack of understanding about arthritis is partially the confusion caused by mis-naming them. I think it’s just human nature to tune out the problems that don’t affect us because we all have our own load to carry. And I think our covering up is sometimes the only way we can hang on to our old selves.
Personally, I need the medical community to step up. I haven’t had much luck educating the people I meet, and I’m tired. They’re supposed to know what to do…right? Right??? sigh……
Most people I have talked to think that RA is just a form of Arthritis that everyone one has or gets at sometime in their lives; and if you would just pop those pills like celeb’s do then you will be just fine.
They just do not want to be open to the truth about RA. I wish it had a different name other than Arthritis attached to the Rheumatoid–then maybe people would be more understanding!!!
Mary, you are so right!
That’s why about a year and a half ago, in some dicussions here, we patients decided to call it Rheumatoid Autoimmune Disease or RAD. Many patients I know have already started saying RAD even though we have not made any formal announcements yet – very soon.
As stated here many times, every RA patient has different experiences with symptoms and treatments, and each individual will ebb and flow along their disease path. No, it doesn’t help matters when “celebrities” minimize the disease, but given the disease is so personalized, they only know their own experience, and perhaps they prefer not to remember or recount the worst of it in public.
To change public perception, however, bottom line is you need lots of money. Susan G. Komen foundation was “grass roots” organization at the beginning, but those roots were planted pretty deep in wealthy pockets. Not only did Nancy Brinker have the passion, she had connections to big money.
The people with RA and those living in their household are the only ones who really understand the devastation of RA. Kelly, I agree with you and others that the name of this disease needs to be changed to reflect more accurately what it really is. I have had RA for 26 years. It has devastated my life. It has reduced me from a highly functioning professional to a person just getting through the pain and exhaustion of one day at a time.
There is resistance on the part of others to accept that RA can be this bad. A wonderful therapist helped me realize the reason most people are not more supportive is that on some level,they realize this could happen to them. It is too uncomfortable for them. It is easier to say it is “just arthritis like Grandma has”. That makes it something that young or middle-aged folks don’t have to worry about. Then, the drug company commercials validate this. It makes those of us who are on the more severe end of the spectrum look like we are just weak or hypochondriacs since we are not out gardening and walking on the beach.
We NEED the AF to step up and stop painting a rosy glowing picture. They need to let the public know the truth. I feel they are the key to awareness. They have the money and the qualified experts to make the message be heard. I have been seeing billboards about lupus. Why not public awareness advertisements, billboards, pamphlets in every healthcare setting etc. for RA? I have personally written to the AF and asked them to start telling the other side of the RA story. Perhaps if they were deluged with requests from RA sufferers to step up, they might do so. What can it hurt to try to start such a letter writing campaign? This site would be a great place to start that idea if anyone else is interested.
The drug companies will continue with the positive ads to sell their “wonder” drugs. I am thankful for the advancements in drug therapy, but they do not give most of us our lives back as portrayed.
I have no idea how a name change actually happens for a disease. Anything we can do to help that process would be great also.
There is strength in numbers. The key lies in getting enough of us together behind any one idea. I think there is hope for a change in public perception when we, as a group, stand up and demand to be heard. Lets make the dream happen!
Much has happened in the 1.5 years since this post was written. During 2010, we worked with patients and leaders of other non-profits for a year to create the RPF http://rheum4us.org. This post was written near the end of that process. If you haven’t followed the posts here about it, here is the link to a list: https://www.rawarrior.com/tag/rheumatoid-patient-foundation/
We’re very committed in our new RPF and will shake things up regarding RA awareness. A key word is “new”. But we’re meeting and planning and and will make a difference soon.
You’re very modest Jay since we have accomplished a lot already. But, you’re right it’s still new & the RPF has done things this way: careful planning, action, and then talk.
This is something that I think about often. Of course, my really sick girl has MCTD, which is a cross between RA, Lupus & Polymositis (though she also has Dermatomyositis). She has been pretty darn severe. My son is only recently diagnosed, but so far would be one of those kids that people would assume to fine because you just couldn’t tell. We try hard to educate, but still people don’t understand.
Kelly, have you spoken with Tiffany from the International AutoImmune Arthritis Movement? http://iaamovement.org/ She was so pissed after being diagnosed, thinking that now finally she would get some respect, but instead was scorned. So, she started a 501c to raise awareness. If you two had the chance to team up… I could see great things happening.
Dee, Hi, yes, we created our non-profit a few months before that. This blog post is from 1.5 years ago, as I mentioned on Facebook when I posted the link today – I’m sorry if I confused anyone. I was just saying that the reasons for the problem with awareness listed here are still valid and we still need to consider them.However, we have accomplished much in the last 1.5 years.
We worked with patients and leaders of other non-profits for a year to create the RPF http://rheum4us.org. If you haven’t followed the posts here about it, here is the link to a list: https://www.rawarrior.com/tag/rheumatoid-patient-foundation/
Thanks, Kelly! No, it’s just me being lost today. I knew about your non-profit, which was why I was thinking that you & Tiffany should team up. I thought that maybe something could be done between the two. Also, I forgot exactly what your goal was. Forgive me. As a non-RA’er, when I get sick, I’m totally lost. That’s where I’m at this week. :p
comment deleted – I’ll write it as a blog post instead. please see http://rheum4us.org
Obviously she’s a blowhard media [deleted] just like her idiot father. I hate how the media makes it seem like Phil Mickelson and others had some pills or a shot and are fine. Their stories aren’t typical.
Discoid lupus isn’t the same as systemic lupus either. I’m not expert, although my mother has discoid lupus. It’s a milder disease than systemic – sometimes called skin lupus. My mother has some issues with her skin, light sensitivity and thin hair. But she’s not taking medication for it as I do for my RA. Her discoid lupus doesn’t disrupt her life as RA has disrupted mine.
Everyone’s story is different, but I’m sorry I have trouble with Kathy Lubbers comments. I don’t think she has any clue. Just like her father.
To me, other than the fact that the article was garbage to begin with, the article never gave any empirical evidence as to why that comparison is even made. When you click on the link that is supposed to be to the article saying why Lupus is worse, you go to an article that talks about how to live with RA(which is just as badly written). I think the article was written with one purpose only, & that was to instigate & aggrivate. THIS is why people don’t take us seriously. AAARRRGGGGGGGGG!!!!!!
Becky, you worked very hard to help the RPF in Chicago and after meeting you in person it’s clear that you don’t have the “easy” kind of RA that is mentioned, whatever that is. So, why do you think that Health.com would want to “instigate”? I never thought about why they did it; I just assumed it was ignorance.
Isn’t it amazing how the media only picks up the atypical cases of RA to promote. The average person doesn’t know the difference between OA and RA, then sees one of the commercials and thinks “how lucky those people are to have a treatable disease”.
I have been very fortunate so far to maintain a somewhat active lifestyle, but I can feel myself slipping. I also hurt every damn day, I just push myself to go on and enjoy life. It’s not something that comes natural or easy any more. Anyone who is “thrilled to have RA” needs to lay the crack pipe down.
As you know, IAAM (the International Autoimmune Arthritis Movement) started the Media Awareness Hotline this past summer (you can find the link on our website and an app is in progress) in order to give people a place to report misinformation in the media…then we have a committee of volunteers who combat the misinformation either by rallying for letters, by privately contacting editors, and offering our services for editorial review for the posting source. Now that IAAM and RDF are both nonprofits maybe we outta team up and do something about this problem? Together we could probably make huge waves????
Hi Mary, I am also a PT (Pediatric developmental disabilities). I cried when I was diagnosed because I remembered learning how debilitating RA was. I have to admit though, that there was much I didn’t know (I went several years with symptoms, because my blood work kept coming up neg). I have learned a lot via the internet, and reading. My mind has been spinning with so many questions, regarding awareness, and treatment (specifically exercise, since we are supposed to be the experts). I would love to connect with other therapists, to see where we could help most. Maybe, since we are patients as well, we could be lecturing at PT schools, and enlightening our future colleagues. The patient perspective is key! Add to that our formal education, and I think we could be valuable advocates (feel free to email me, I’d love to pick your brain).
I’m sure it would be difficult to develop “best practice” since everyones disease course varies so much, but it is “food for thought”.
I think it may be a virtual “door to door” campaign, unfortunately. Because of the “coming out” about having RA, I have had the chance to explain what the disease truly is to several people. They are shocked when they hear what RA is and, more importantly, is not. It will take a lot of voices to change the public perception because this has been such a hidden condition for so long. My mother didn’t understand the disease until she started living with me and seeing the effects and my medications on a daily basis. My main point is that it will take a lot of work and a voice, like Kelly, who is willing to get on major media channels and explain RA– mostly in the same terms as this blog entry.
I asked a friend the other day, did you know so-and-so’s wife (celebrity) has lupus? Her response was lupus is a very serious disease.
I bit my tongue. I wanted to yell out “hello??? have you not seen what I’ve gone through on a daily basis this past year”? (dx w/ RA about a year ago).
People, even one’s who should know better, have NO concept of what RA actually is, even when they’ve seen it first hand.
So I guess the good news is, I don’t have lupus because that would be a serious disease and my RA is just a walk in the park. Lucky me. Hmmm…
I’m curious if part of their funding for “Awareness” is for them to put their Arthritis Foundation logo on products for sale purporting the products ease of use for all of the people with arthritis in the hands. I don’t know it was just what I thought of when I read this comment. 🙂