I'm all about hope and finding ways to lead a full and happy life with my RA, but this article from ABC News almost makes it sound as if I really shouldn't have anything to worry about since I wasn't diagnosed 30 years ago.
Of course new developments and medications are exciting and bring us hope. Of course people suffered a lot more from RA in the past without these developments. But does that mean that RA patients today, particularly the ones still searching for the best treatment regimen (like me), are suffering any less from the pain and fatigue of RA? I don't think so.
To be fair, the article doesn't say new treatments will cure RA patients. It says we will be "much older when joint surgery becomes [our] best option." (Awesome. Now I feel better!) But the article says "today, although disease flares and progression can't be prevented entirely, doctors can now tell patients to expect long periods of remission."
Expect? Though I like to hope, I'm actually grateful my rheumatologist never said that to me. He said I might experience remission - that it was possible, not necessarily probable. And I think this is the mindset that you need to really deal with accepting RA into your life. What if you can't find the right treatment or it takes a long time to find it? You need to be able to get on with your life rather than being miserable until then. I think it is a little bit misleading to tell patients to expect periods of remission - and long ones at that. RA is a disease that never goes away completely, and that's something people with RA simply need to deal with.
The article also talks about a rheumatologist who "tells new patients that they can live normal lives." While it is true that someone with RA can certainly live a "normal" life, the important point to make is that it won't necessarily be the same life they were living before the diagnosis. Changes will certainly be necessary. Likely a lot of changes and probably some that you didn't want to make but don't have any other choice. Leading a patient to believe they can get back to whatever life they had before RA just isn't fair.
Frustratingly, the article also quotes a doctor saying "RA back then was a terrible disease." While I realize that the consequences of the disease were certainly worse "back then," is it really fair to say that the disease itself is any less terrible today? If I haven't found a treatment that takes away my pain and fatigue, am I suffering any less than someone "back then"?
I feel like the tone of the article suggests that RA today just isn't that bad, that you just take the medicine and that makes it easy to deal with, which I feel is misleading. Adjusting to a life with RA is a lot of work, and RA patients need support from their families, friends, the medical community, and from society as a whole. Articles that make RA look like its not that bad make those of us with RA look like a bunch of whiners, which I think can sometimes make people reluctant to offer help. But in reality, most people I know (in life or online) with RA are strong and can deal with a lot - probably more than they should - before they ask for help. Myself included.
Unfortunately, my frustration with ABC and this article grew even more when I saw that the author of one of my favorite RA blogs, RA Warrior, had not one but two of her comments removed from the article by ABC. I have seen Kelly's comments on other articles and she is always respectful, so I thought that was particularly frustrating. Why would they remove the comment of a polite dissenter? Without explanation? That's just disrespectful.
But, the good news is that Kelly and others with RA are doing what they can to teach the world the true story of what RA is like, to encourage people to provide the help and support that we need, and I think that is certainly something to be hopeful about.
::deep breath:: I need to stop feeling so riled up and get back to the mountains of homework I need to accomplish this week. If I can.
Of course new developments and medications are exciting and bring us hope. Of course people suffered a lot more from RA in the past without these developments. But does that mean that RA patients today, particularly the ones still searching for the best treatment regimen (like me), are suffering any less from the pain and fatigue of RA? I don't think so.
To be fair, the article doesn't say new treatments will cure RA patients. It says we will be "much older when joint surgery becomes [our] best option." (Awesome. Now I feel better!) But the article says "today, although disease flares and progression can't be prevented entirely, doctors can now tell patients to expect long periods of remission."
Expect? Though I like to hope, I'm actually grateful my rheumatologist never said that to me. He said I might experience remission - that it was possible, not necessarily probable. And I think this is the mindset that you need to really deal with accepting RA into your life. What if you can't find the right treatment or it takes a long time to find it? You need to be able to get on with your life rather than being miserable until then. I think it is a little bit misleading to tell patients to expect periods of remission - and long ones at that. RA is a disease that never goes away completely, and that's something people with RA simply need to deal with.
The article also talks about a rheumatologist who "tells new patients that they can live normal lives." While it is true that someone with RA can certainly live a "normal" life, the important point to make is that it won't necessarily be the same life they were living before the diagnosis. Changes will certainly be necessary. Likely a lot of changes and probably some that you didn't want to make but don't have any other choice. Leading a patient to believe they can get back to whatever life they had before RA just isn't fair.
Frustratingly, the article also quotes a doctor saying "RA back then was a terrible disease." While I realize that the consequences of the disease were certainly worse "back then," is it really fair to say that the disease itself is any less terrible today? If I haven't found a treatment that takes away my pain and fatigue, am I suffering any less than someone "back then"?
I feel like the tone of the article suggests that RA today just isn't that bad, that you just take the medicine and that makes it easy to deal with, which I feel is misleading. Adjusting to a life with RA is a lot of work, and RA patients need support from their families, friends, the medical community, and from society as a whole. Articles that make RA look like its not that bad make those of us with RA look like a bunch of whiners, which I think can sometimes make people reluctant to offer help. But in reality, most people I know (in life or online) with RA are strong and can deal with a lot - probably more than they should - before they ask for help. Myself included.
Unfortunately, my frustration with ABC and this article grew even more when I saw that the author of one of my favorite RA blogs, RA Warrior, had not one but two of her comments removed from the article by ABC. I have seen Kelly's comments on other articles and she is always respectful, so I thought that was particularly frustrating. Why would they remove the comment of a polite dissenter? Without explanation? That's just disrespectful.
But, the good news is that Kelly and others with RA are doing what they can to teach the world the true story of what RA is like, to encourage people to provide the help and support that we need, and I think that is certainly something to be hopeful about.
::deep breath:: I need to stop feeling so riled up and get back to the mountains of homework I need to accomplish this week. If I can.
7 comments:
Excellent job - and not just cuz we agreed. :D
I'll be glad to show others this post - I'll go put it on my Twitter right now! Makes me feel good that I'm not alone in my response. I really feel like the disease I read about is not the one I live with...
Thank you so very much for being a voice for those of us suffering! It's ABC and others, misleading news articles and clips on the news that make all of us look like big babies that complain too much. I have been diagnosed long enough to know that a vegan diet, avoiding gluten or dairy or one magic pill is going to take this pain away. If there was a magic pill or one treatment that worked for everyone I would take it and I would spread the word. RA is the same disease that it was 30 years ago there are just new and different pills and infusions to throw at it. RA won't be different till there is a cure for all. Thanks for the courage and support! PS found your blog through RA Warrior :). Best of luck in your studies and RA treatment.
Thanks, Kelly. ~;o)
kcsalmi: I think this type of misleading article has a really negative effect on how those of us with RA get treated by people in the outside world. A lot of people are already misinformed and think RA is "just a little joint pain"- they don't need theoretically reputable news sources making this misunderstanding worse! If the article was announcing the magic RA pill that would be one thing, but the other thing the article didn't do was indicate how much patients suffer while they search for the right treatment for them - often for years. Myriad treatment options may be out there, but that doesn't really mean we'll find the one that works any quicker or struggle any less until we do. I hope you find the other info on my blog useful! And thanks so much for the comment!!
The article makes it sound like 2/3 of RA patients were all set with methotrexate, and now Remicade and Enbrel provide (total) relief and stop disease progression for the other third.
Also, the reference to "cool" new drugs seems to discount the side effects just a wee bit.
The part about the outrageous costs bothers me, too, since it simply shouldn't cost so much to feel sometimes only marginally better.
It makes me mad to read, and I don't even have RA.
I'm pretty sure I gave you the "At least you're lucky you aren't living with RA 30 years ago" line early on in your diagnosis. I felt bad about it after I said it then and feel bad about it now. I think it's like those people at funerals with the "Your loved one is in a better place" line--you know it's well-intentioned but it really misses the point time a gazilliondy :(
ABC's take is a little too upbeat about what a difficult diagnosis RA is--in contrast, I was really impressed by the NYTimes Health section's coverage of life with RA.
Feel better, little knee!
Oh man. Don't even get me started on the problems with (some) TV news people. (Disclosure: I am a print journalist.) I can't even tell you how many problems I've had with TV news jerks waltzing in somewhere I've spent months cultivating sources and, not only expecting people to just open up to them, but also wanting me to fill them in on the last billionty things that have happened. Arg.
But that really sucks. Lazy journalism isn't acceptable ever, especially if things they public (and I'm sure air) are basically false. Raar. Having a chronic, invisible illness is hard enough. We don't need bad reporters making it worse.
-Nessie
NESSIE: Agreed! Also, you said raar! I totally say that. ~;o)
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