Don’t have RA? READ HERE.

If you have a loved one with Rheumatoid Arthritis, then you’ve come to the right place.  Understanding their disease is important because RA is not like any other form of arthritis.  It does not develop because you’re getting old or because you had an injury, it’s genetic.  Not much is known about how the disease is activated, but it appears to become triggered by infections, illnesses, and even after pregnancy.  Most people with RA are women in their thirties who have just given birth, but you can get the disease at any age.

This disease hinders what we can and cannot do. RA causes your immune system to go haywire.  It starts to deteriorate the membrane between joints, which can physically not be seen very well, only by some swelling and occasional bruising.  I believe this makes RA harder to understand.  But even though you can’t see the pain or the damage, it is there.   We can’t run after a bus, lift heavy objects, or write a page essay by hand because it hurts.

Because it is your immune system causing all the damage, most of us will take medication that slows it down.  This makes us very prone to illness, and once we are sick, it’s hard to get well again.  These meds also make us feel like we’re sick 24/7.  You know how tired you feel when you get the flu?  We are always that tired. We need you to understand that this isn’t laziness.  We do not take a billion naps a day because we want to, nor do we like having to sit down after walking or standing for ten minutes.  But we have to.  We cannot do as much with our day as you because we do not have the energy.  If we work too much we feel worse, and this could cause a flare.

However, we also need you to keep these things in mind as well:

Everytime you go to school/work/any public place while sick, you run the risk of getting someone like me very, very sick.  Because our medication slows down our immune system, we are more likely to get sick, and it is much worse for us and it lasts much longer than normal.  If we get really sick, sometimes we have to quit taking our medications to get well again.  This can cause a flare (basically meaning, our disease will be worse).   Please stay home when you are ill.

We know our limits, so let us carry our own things (such as book bags, groceries, etc.).  If we need help, we’ll ask for it.  Or, you can simply ask if we need help.  But if we say no, we mean it.  We aren’t completely helpless.  That being said, if we say we can’t do something, then we really can’t.  It hurts my pride to admit that I can’t carry something/can’t go somewhere/etc.  I don’t like doing it.  So when I do say I can’t do something, it’s because my RA is very bad.

To the boyfriends/girlfriends: cut down on the rough-housing.  Tickle wars are a lot of fun, but know which joints hurt before hand and avoid them.  Talk about RA often, always know whats up with your significant other in order to avoid injury or aggravation to a joint.

I don’t know about the rest of the arthritis community, but I personally hate hearing “I’m sorry” after I say my pinky hurts or something.  It is so much a part of me now that it’s almost like saying sorry for my hair being blonde.  Okay…maybe not that extreme.  It’s like saying sorry for having a hang nail.  There we go!

Yeah, it sucks that my pinky hurts, and  it shouldn’t be brushed off like nothing, but it’s not the end of the world either.  Say something like this: “That sucks.  Dude, I think I failed my math test last period, that really sucks too.”  You listened to us complain, you agreed that it isn’t fun, but the world goes on.  Perfect!

On  the other hand, be watching for really bad days.  If we’re on the verge of tears (I say this knowing that most RA patients are female), then we need comfort.  BUT NO SORRYS.  Remind us that you are there, and everything will be okay.  And hugs and laughter are the best.  <—-Remember that!

Above all, listen.  Especially if your loved one has just been diagnosed.  They are going to be scared, and will need to vent a lot.  I don’t know what I would’ve done without my best friend Diamond Shelman in high school.  When I was first diagnosed she was there for me the whole way, and I can’t thank her enough.  Be that person for someone, and they will appreciate you for a lifetime, too.

On behalf of the entire arthritis community, thank you for reading this post.

1 Comment (+add yours?)

  1. Leisa
    Jan 19, 2016 @ 13:27:50

    hi love. Quick note, it’s not commonly referred to as a genetic disease. While a family history makes you more likely to have RA, the jury is still out so to speak about whether your environment, health, and lifestyle play and equal role in whether or not you develop it. I personally believe it has a lot to do with genetics, but it isn’t actually accepted in the RA community as a genetic disease.

    Reply

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