Posted in Advocate, Health Activist Challenge, NHBPM

#NHBPM Day 28: RA, It’s Not Just Arthritis


 

Today’s Prompt: Say WHAT?! What’s the most ridiculous thing you’ve heard about health or your condition. Was there any context? What did you think at the time you heard it – and what do you think of it now?

When rheumatoid arthritis came into my life, I eventually got tired of  hearing that it was “just” arthritis.  Here I was struggling with this new diagnosis and I was in a lot of pain because I had not yet found a treatment plan that worked for me, and what I was going through was being minimized as “just” arthritis.  I would hear things such as “we get arthritis as we get older,” and “well let’s face it, you are getting older.”  Seriously, I was 32 when I was diagnosed.  If I was 50, those words would have made sense to me but in my early 30s, they made very little senseHearing “it’s just arthritis” didn’t really help and even osteoarthritis can be pretty painful so to that something is “just” simple doesn’t minimize what the sufferer is going though. Even so, arthritis from age and wear is tear is osteoarthritis and it is definitely not “just” arthritis.  Further, it is much different than RA which is an autoimmune disease.  Not to downplay lupus, but if I told people I had lupus, I would most likely get more sympathy. However, RA was “just” arthritis.  

I would find myself repeatedly explaining that the immune system of someone with RA is fighting its own tissues as if they were foreign bodies invading.  This response attacks the joints and soft tissue around the joints and causes inflammation.  If that inflammation is left untreated or if resistant to treatment leads to joint destruction and disability.  Lifestyle changes such as weight loss and healthy eating help but they are just one small step in being the disease at bay.  Further, RA doesn’t just affect joints. It affects tendons, ligaments, lungs, chest, organs and eyes.  There are also other symptoms that RA patients have such as fevers and debilitating fatigue. Further, RA doesn’t just affect one or two joints.  It hits both sides of the body and often nearly every joint so it doesn’t even matter if the joint is weight bearing.

While we are on the subject of the notion that RA is just arthritis, there are other misconceptions that people have that lead them to the conclusion that RA is just arthritis.   As I noted before, all joints are affected so while losing weight and/or exercising can help weight bearing joints, it does nothing for non-weight bearing joints such as hands and wrists.  Also, exercise can be hard for RA patients when they in a flare and for some RA patients, the flares never end.  So, for those who have this notion that all an RA patient has to do is lose weight or exercise to feel better, imagine exercising with knives poking at every joint while you did it.

Here is another one on the list of “it’s just arthritis.” Only old people get RA because for some reason we assume that the two conditions are the same and since osteoarthritis generally affects the older population, someone my age cannot possibly have RA. Most RA patients are diagnosed between ages 30 and 50. Children can also be diagnosed with RA and most autoimmune diseases are most common in women but men are also affected.  There were people in my life that looked at me like I was insane when I was diagnosed and basically assumed I was making it up because apparently only “old people” get arthritis.

Have you even been to a new doctor or to urgent care or the ER and you tell them you have RA and they say, “your joints are not deformed” or something along those lines?  Even people in the medical profession who are not rheumatologists don’t understand RA.  They have this notion that people with RA are really sick people. I guess that beats the notion from the outside world.  (I think.) The thing is that most RA patients don’t even look like RA patients (if there is a way that RA patients should look).  RA isn’t always something you can see either.  You can see inflammation and maybe you can’t.  RA patients don’t want to be sick and we try really hard to keep our lives as normal as possible.  At night, when I lay down to go to bed, you don’t see how much a struggle that is because every joint in my body is screaming out with pain.  In the morning, it can be hard to get out of bed because of the pain and stiffness.  During the day, I struggle with joint pain and other symptoms including that weird low grade fever.  See, these are things that no one sees so to think that RA patients look different, they really don’t. The difference is that we struggle daily to feel normal and to be part of a normal world.

Last, a lot of the people that actually accept that you have RA don’t actually see you as normal.  In fact, they think that there is no real hope for those of us with RA.  For me, it has been well over three years since my diagnosis and while I am not pain free, I am in a much better place than I was that first year, pain wise, symptom wise, and even emotionally and mentally. Treatment for RA is better than it has ever been but a lot of the drugs used to treat are pretty strong.  I take Humira, Sulfasalazine, and Methotrexate.  Humira is a pretty strong drug that suppresses your immune system which means it makes it pretty vulnerable to infection.  Methotrexate is a chemotherapy drug but RA patients take a much smaller dose than do cancer patients. It is pretty effective in relieving joint inflammation and pain, slowing the disease down and preventing disability by delaying joint destruction.  Like Humira, it makes your body susceptible to bacterial infections so you have to be your own watchdog/advocate by paying close attention to when symptoms of infection start. Studies indicate that sulfasalazine is a pretty effective drug for relieving the symptoms and slowing the progression of RA. Combination treatment with RA medications is the new norm for treating RA patients.

Every day, doctors learn more about RA and autoimmune diseases.  Also, new treatments are popping up every day and these medications continue to help people living with RA to have normal lives. I know that there is hope despite RA and the years have taught me quite well that RA isn’t “just” arthritis.  That statement no longer bothers me and I no longer feel to need to have to explain my disease to anyone.  RA is a part of my life but it no longer dictates it.  

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4 thoughts on “#NHBPM Day 28: RA, It’s Not Just Arthritis

  1. Excellent post, Lana. That “just” arthritis schtick really IS annoying. Sometimes, when my patience is low, I wish I could wiggle my nose or something and transfer my pain and fatigue to the person dismissing the disease, just for a couple of minutes. I’m sure they’d never belittle my reality ever again if they could experience it.

    How are your back and neck injuries from the car accident? Did the injections help as hoped? Thinking of you, as always. Take care… ‘)

  2. You have hit all my hot buttons on this one! Oh so right about it is just arthritis and all of it. Course I am 54 but I can relate to your feelings as I was first diagnosed at 42. I am hoping that with more and more people advocating for ra and autoimmune disorders, there will be more awareness out there and hopefully we will not have to face some of these comments in the future.

  3. Great post – I hope that people stumble upon it and find out the truth about your condition. (And autoimmune conditions in general.)

  4. Great post Lana, I have both RA and OA. While it’s “just” arthritis to a lot of people, far too many of us are living with it today. I wish they could find a cure but more realistically I am hopeful that someday soon researchers will make big strides in the fight against RA so that future patients will be able live a more normal life with this horrid disease.

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