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“At Least It’s Not Cancer”

“At Least It’s Not Cancer”

There are so many things that those of us living with RA hear all the time. Sometimes we hear “you are too young to have arthritis!” or “my grandmother has arthritis too!” or “I have that in my pinky finger!” Other times we hear “but you don’t look sick!” or we get advice to try a particular diet or supplement or lifestyle change that will “cure” our arthritis. But after reading the comments on my recent post, 8 Things Not To Say to Someone Living With RA, I think there may be a big one that I missed:

“At least it’s not cancer.”

I don’t think anyone has ever said this directly to me – but many of the people who commented on my original post mentioned having it said to them. Or they’ve heard something like “at least it’s nothing serious” or “at least it’s not life threatening.” And I know that even if people aren’t saying things like this out loud, there are a lot of people out there who think that having rheumatoid arthritis just isn’t that serious.

On the one hand, I have to admit that I wholeheartedly agree. Yes. At least it’s not cancer. Cancer is scary. Cancer is serious. Cancer is known to be life threatening and very difficult to treat. I am, in fact, very glad that I do not have cancer.

But…

On the other hand, I think comments like these unfairly downplay the seriousness of rheumatoid arthritis and other autoimmune diseases. While it is true that these diseases are generally not considered to be fatal or terminal, that does not in any way mean that they are not serious.

Most autoimmune diseases are chronic, which means that patients will have to deal with symptoms and effects of the disease for the duration of their lives. For example, there is no cure for rheumatoid arthritis, so those of us who have been diagnosed with it will have to live with the consequences for the rest of our lives. The chronic nature of autoimmune diseases is one of the reasons that they are often linked to a higher risk of complications ­– and these complications can, unfortunately, sometimes be fatal.

This issue was recently brought to light in the news with the announcement of the passing of Harold Ramis, the an actor who played roles in Ghostbusters and Stripes and directed Caddyshack, National Lampoon’s Vacation, Groundhog Day, and Analyze This. Ramis had autoimmune inflammatory vasculitis, a disease in which his immune system attacked his blood vessels causing inflammation (somewhat similar to the way a person’s immune system attacks their joints causing inflammation when they have rheumatoid arthritis). But although Ramis suffered from this autoimmune disease, his cause of death is listed as complications from his condition. He was only 69 years old.

I have also come across the seriousness of autoimmune diseases in my personal life. Last September I volunteered as support staff on the Arthritis Foundation’s California Coast Classic – a 525-mile bike ride from San Francisco to Los Angeles. The cyclists who participated worked hard to raise funds to provide educational resources for people living with arthritis, scholarships to send kids to the national Juvenile Arthritis Conference, funding for juvenile arthritis camps, and more. Being involved with the ride was an amazing experience and I had the opportunity to hear so many stories about how arthritis impacts people’s lives. But perhaps the most powerful story I heard was from a couple that does the ride every year in honor of their daughter. Their daughter, who suffered from juvenile arthritis, passed away due to complications a few years ago. She was only ten.

I’m not saying that we should necessarily dwell on these sad and scary realities about autoimmune diseases. But I do think there is something we can learn from these stories. While better treatments are being researched every day that will improve the future prognosis for those of us living with autoimmune conditions, I still think it is really important to recognize that these conditions should not be taken lightly. Autoimmune conditions, like RA, can be very serious. And, unfortunately, sometimes they can lead to complications that can be life threatening or fatal.

Of course I am glad that I do not have cancer. But, if I had my choice in the matter, I wouldn’t want to have rheumatoid arthritis either!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Christy
    5 years ago

    I’ve got to say, I’ve been told this more than once by friends who were trying to make me feel better. The actual effect is that you feel completely misunderstood and that you’re being perceived as whining. It’s a terrible thing to say to someone with RA.

  • Mariah Z. Leach moderator author
    5 years ago

    Hi Christy – It is frustrating when well-meaning comments make us feel worse instead of better. And it can be difficult to try to educate people about the realities of living with RA, but I try to take it as an opportunity to make life better for all of us by teaching people the truth about RA. ~;o)

  • Mary
    5 years ago

    Mariah, you ask if I have ideas other than RA Walks. How about conferences put on by and for people with RA with admission fees. Panels could be set-up that have presenters with RA discussing different aspects of RA. The topics are endless and the need is great as this has to be one of the most misunderstood diseases of the century. I’m in a city of 3 million plus people and there is not one RA Support Group to be found. I’m not well enough to start one or I would. I can’t imagine having RA before the internet with the many avenues of support on blogs and forums.

  • Mariah Z. Leach moderator author
    5 years ago

    P.S. If you are interested in attending a conference like this check with your local chapter of the Arthritis Foundation – every year they give out travel grants for people to attend the conference, so you may be able to attend even if you don’t have the resources to pay for it yourself!

  • Mariah Z. Leach moderator author
    5 years ago

    Hi Mary – There actually are conferences sort of like what you suggest, though I will admit that they are more likely to focus on JA or advocacy efforts (In fact, I am heading to DC for the Arthritis Foundation’s annual advocacy conference in about two weeks). And while I fully agree that conferences like this are extremely helpful for those of us living with these horrible diseases (and our loved ones), the admission fees go directly towards the cost of running the conference and thus these are not particularly good fundraisiers. To really raise money for research we need events that promote awareness and draw in people from outside of the arthritis community – so we need ideas to get others involved and interested. Unfortunately, people are familiar with and willing to participate in charity walks, so these are still good source of fundraising until we can come up with better ways to draw people in!!

  • Anita
    5 years ago

    There are so many ways RA can kill. Not being able to move fast enough to avoid physical danger, like cars while crossing a street; medication side effects (I came close to having kidney failure with one drug); surgical complications; and many other things. I recall reading about a book someone wrote after their loved one died due to issues related to deterioration in the cervical spine.

    So, while I’m glad I don’t have one of the many fatal conditions out there, I don’t dismiss RA as a non-threat. I’m grateful not to be as bad off as many others (there’s always someone suffering worse than you are), but after 32 years with RA, I know that it’s no laughing matter.

  • Mariah Z. Leach moderator author
    5 years ago

    Hi Anita – I agree that I am grateful not to be struggling as much as some others out there. I think counting our blessings can really make a difference in how we feel every day! On the other hand, I think you make some really good points about the seriousness of RA. Thank you for sharing.

  • Norreen Clark
    5 years ago

    I’m with you I would rather have RA than cancer. I have rheumatoid vasculitis and finding medication that does not make me sick or side affects that get to you can be a problem. I’m doing some research on medication and looking for any one to let me know what problems they have had or something that works for them. Most make me sick. I mean sick to the point you can’t leave your home. I’m taking right now methotrexate and 10mg of prednisone.

  • Mariah Z. Leach moderator author
    5 years ago

    Hi Norreen – The search for a combination of medications that actually works can often be a long and frustrating one. And everyone’s experience with and reaction to medications will be different – so while it can be useful to learn from the experiences of others your experience may or may not be the same (one of the more frustrating aspects of living with RA!). As for me I started off on a similar track, medication-wise: methotrexate and prednisone. Then we added Remicade, which worked for a little bit but in the long run didn’t keep working. So then I moved on to Enbrel, and in the end I think my RA was probably best controlled when I was taking methorexate and Enbrel. You may want to talk to your rheumatologist about your biologic options (medications like Remicade and Enbrel). Best of luck to you!!

  • Marcia Parker
    5 years ago

    Wonderful article. No one has ever said to me “at least it’s not cancer”, because if they did I would have to say that I do have cancer along with my RA. Two years ago I was diagnosed with NH Lymphoma stage 4 and not curable. But the good news is that it can be kept at bay with treatment for a while. Although the cancer is no fun, living with RA has been much more difficult. And that’s what I relay to people. It is truly a rotten disease to live with day in and day out. I am so thankful for sites like this. They help me so much.

  • Mariah Z. Leach moderator author
    5 years ago

    Hi Marcia – Thanks so much for sharing your story. I do not personally have much experience with cancer (other than my grandma when I was very young) but I have heard others who have experienced both RA and cancer say similar things. I am so sorry you have had to deal with both of these horrible diseases! You are so brave!

  • Marcia Parker
    5 years ago

    FYI

    “The one cancer that’s definitely been linked to RA is non-Hodgkin’s lymphoma,” Dr. Fiocco says.

    RA patients have a two to four times higher risk than people without RA. Other blood cancers, such as leukemia and other forms of lymphoma, as well as lung cancer and melanoma, may also be a problem. Not only is the disease itself a culprit, but some drugs are too.

  • Andrew Lumpe, PhD moderator
    5 years ago

    Thanks so much for writing about this. In actuality, autoimmune diseases like RA share much in common with cancer in terms of biochemical processes. And the death of Harold Ramis from vasculitis drives home the seriousness of autoimmune diseases. While dealing with recurring migraines, my neurologist called for an MRI to make sure that wasn’t an issue (my brain blood vessels checked out). RA can be scary stuff and the long term impact is on much more than bones and joints (which is bad enough as it is).

  • Mariah Z. Leach moderator author
    5 years ago

    Hi Andrew – Some of the other commenters have suggested a follow-up post that would reach farther into the specifics of RA and mortality, including statistics. Perhaps with your science background this would be a good topic for you to approach? My perspective so far is a personal one, not a scientific one, so I can only go so far. But I do think it is an important topic and I am glad we are generating some discussion.

  • Mary
    5 years ago

    Mariah, I’d love to see a follow-up article with a report of the causes of death from rheumatoid arthritis and some facts about the number of people who die from it. I think your article was too light a spin on the seriousness of the disease. It’s not just chronic and it’s not just fatal once in awhile. We are not “dwelling” when the facts of the disease are reported. We’re being honest and asking for a cure because it is a fatal disease. It’s not only unfortunate and it is not sometimes that it is fatal. There is no need to qualify the seriousness of this disease. It is a disservice when RA is presented as mostly a chronic disease that is inconvenient but do-able. Besides it being fatal, it is still disabling for far too high a number of those who have it.

  • Mariah Z. Leach moderator author
    5 years ago

    Hi Mary – I do appreciate the constructive criticism. This post is based on my personal experience and perspective, and luckily I have not experienced the truly dangerous side of this disease (at least so far). Unfortunately statistics of the nature you suggest are often hard to come by as RA is rarely listed as the cause of death – more often it is complications or infections, which of course are due to the RA but makes the numbers more difficult to come by. I am not an expert on this topic but I do think that it is an important one and I am so glad that this post could generate such great discussion on the matter!

  • Mary
    5 years ago

    ….omg I am so tired of RA light !! RA kills people. The dysfunction of the immune system leads to hundreds of thousands of deaths a year primarily from cardiovascular disease and infections. Systemic inflammation causes internal organs to fail. The development of co-morbidities when an autoimmune disease develops is staggering. Complications from side effects of medications for RA kills people. People take their own lives because they can’t tolerate the pain year after year trying treatment after treatment with no reprieve. If you’ve spent any time on RA Forums you’ll hear of deaths from RA. There are many research articles on mortality and RA. If it doesn’t kill people why are there published studies on “mortality and RA”. Just google those words. Where is the outrage and the admission of the cold hard facts !!! *sigh* I also will applaud the day when there are alternative fundraising events in direct protest to “Walks for Arthritis” since so many with RA have to use assistive devices such as canes and wheelchairs to even complete the simplest activities of daily living. It is the RA Light spin in the media that continues to perpetuate myths about RA that it isn’t so bad. It is the millions of women (and men and parents) who sit by in silent complicity with this nonsense that contributes to the misperception by the public.

  • Mariah Z. Leach moderator author
    5 years ago

    Hi Mary – You are very right that there are some staggering statistics about RA and mortality. Unfortunately the fact that they almost always include co-morbidities or complications seems to make these numbers loose their emphasis. It is really unfortunate and I think it is important that we try to re-educate people as much as possible as to the true seriousness of autoimmune conditions like RA. And I also tend to agree with your point about Arthritis Walks – have you got ideas about alternative fundraising events that would be equally lucrative? I would really love to hear them!!

  • Wren moderator
    5 years ago

    Well said, Mary!

  • Dawn Peel
    5 years ago

    I too have been told by an Oncologist, following me for MGUS those exact words, “at least it’s not cancer.” At that time it did not bother me as much as it does now because at that time my dance with RA was just beginning. Now 4 years later I get very angry when I think of this statement. At least with some forms of cancer there can be cures. The journey to cure maybe difficult but there is a definite possibility of an end to that condition.

  • Mariah Z. Leach moderator author
    5 years ago

    Hi Dawn – While I in no way mean to start a battle between cancer and RA, as both are clearly horrible, you make a very good point that at least some forms of cancer are curable, whereas those of us with RA will live with the symptoms for the rest of our lives.

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