This post has taken me a few days to write, which is why my blog has been silent since Wednesday evening.

The truth is, it started out as a rant and has been evolving over the last few days as I try to think of what I want to say.

This is not a typical “Notes from the Princess” blog. But even though I usually blog about my family and my daily life, and even though I usually make myself laugh out loud in the process, that doesn’t mean that all I ever do is laugh. I’ve discovered that the day-to-day bummers of life can be dealt with a little more easily through laughter. In fact, even the hard stuff of life is eased a little by a giggle.

But sometimes we need more, and that is what this post is about.

For the past two months I have been preparing to captain a team in the Des Moines Arthritis Walk. I have been raising money, recruiting walkers, signing up sponsors, ordering t-shirts, nagging my team members. I have been trying to think of creative ways to raise money for my team. I’ve sold my kids’ artwork. I’ve sold baseball tickets. I’ve held contests and a bake sale.

And still my team, which has twice as many people as I had originally expected, has raised not even half its goal. And this frustrates me.

To be honest, I feel sometimes like people don’t get it and they don’t care. I had a friend several years ago (we’ve lost touch) who had breast cancer at a fairly young age– while she still had very young kids at home. She was awesome. She was funny, she had a great sense of humor. She held fund raisers all the time to raise money for the Komen Foundation. And people would practically throw money at her. If she was holding an event, half the churches in the Des Moines area would be fighting over where she would hold it. Maybe I’m exaggerating, but not a lot. People care about breast cancer.

When we walked in the Des Moines Walk to Cure Juvenile Diabetes, I was overwhelmed by the sheer numbers of people who walked. The team I was on made a lot of money. Like in the tens of thousands. It was incredible. And I imagine that for those kids with diabetes, seeing so many people who had come out to support them and encourage them and stand with them had to be such a great experience. People care about sick kids.

And don’t get me wrong, because the last thing I want to do is seem like a jerk who doesn’t care about people with cancer or childhood diseases. I have known people affected by horrible illnesses and I have been touched by their story and I have done what little I could to help them.

But lately I have been feeling very alone in my journey with arthritis. I have felt, perhaps unfairly, that maybe if I had cancer or a sick child people would care more about my pain. To be honest I have felt a bit sorry for myself. And that is when I realized that maybe people don’t care because they don’t get it. The kid I met at the Omaha Arthritis Walk last weekend was the epitome of “not getting it.” Isn’t arthritis just, you know, aches and pains?

If that is the assumption people have about arthritis, maybe that is why their sympathy doesn’t reach to their wallets. Maybe that’s why they seem like they don’t care. Because everyone has aches and pains, right?

And I also think that people think of arthritis as an “old person’s disease.” Most people who know someone with arthritis know a grandma or great-uncle whose hands are a little twisted or whose knees hurt when it rains. Isn’t arthritis just a fact of aging, like gray hair and wrinkles? Well, maybe it is. But that’s not all it is. And even if it were, what does it say about our society if we’re not willing to care about and support our elderly? I’ve been in the nursing homes where the patients sit for hours waiting for someone to visit– someone who loves them and is willing to endure the odors of bedpans and institutional food– and I’ve seen so many of those people return lonely to their rooms at night. It scares me to grow old.

As I have been pondering these things during middle-of-the-night can’t-fall-asleep sessions with my pillow and my stiff joints, I have decided that I need to try to do something aside from desperate fund raising attempts. I can’t make you care. I can’t make you give money or time to the Arthritis Foundation. But I can share my experiences, which are thankfully at this point very limited. I can help raise your awareness, help you understand a little more about what life with arthritis is. It’s not just aches and pains.

Here’s what life with arthritis means to me.

  • Life with arthritis is knowing that for the rest of my life I will be dependent on medication that will slowly cause other parts of my health to deteriorate.
  • Life with arthritis is limiting the ways I can play with my kids because I don’t want to get hurt.
  • Life with arthritis is waking up during the night with my shoulder hurting so badly it makes me cry.
  • Life with arthritis is being unable to open the childproof lid on a bottle of Dimetap for my child, and finally stabbing at it with a steak knife so I can get the medicine out.
  • Life with arthritis is knowing that I am likely to wake up in pain every day for the rest of my life.
  • Life with arthritis is crying as I try to change a diaper on my son, because I can’t get my fingers to cooperate.
  • Life with arthritis is telling my boss that I can’t do my job because I can hardly move my wrist.
  • Life with arthritis is lying on the exam table in my doctor’s office feeling sick because she just put a needle full of cortisone in a sore joint in my shoulder.
  • Life with arthritis is fearing that I’m going to really make someone mad because they think I’m flipping them off, when in truth it’s just that I can’t bend my middle finger.
  • Life with arthritis is days when I just feel so yucky all I can do is lay on the couch and watch my children play.
  • Life with arthritis is not always being able to sign my name the right way.
  • Life with arthritis is the fear that someday I will have to give up scrapbooking because I can’t manipulate the paper anymore.
  • Life with arthritis is asking my husband to help me get dressed because I just can’t today.
  • Life with arthritis is watching as my index finger gets a little more twisted each day.
  • Life with arthritis is hoping that they perfect voice recognition software before I lose my ability to type.
  • Life with arthritis is hoping no one shakes my hand too hard.
  • Life with arthritis is reading that someone died of complications of arthritis, and wondering what that means and if that will happen to me.
  • Life with arthritis is walking a constant tightrope of trying to find the medication that will best treat me that we can also afford.
  • Life with arthritis is not knowing how to respond when people ask how I’m doing today.
  • Life with arthritis is constantly praying that if my children inherit what my dad so lovingly passed on to me (thanks so much Dad!), it will be after they have found a cure.
  • Life with arthritis is wanting people to realize that it’s not in my head, that it doesn’t come and go, that it’s not just aches and pains, and that even if I’m not talking about it today I’m still in pain.

I don’t write these things to make you feel sorry for me.

I write them so that you can understand a little of what it’s like for those of us who have been diagnosed with arthritis.

I write this so that you can click here and learn more about this and understand that you probably know someone personally who has arthritis, even if you don’t realize it.

I write them so that when I tell you I have a fairly mild case you can realize just how bad it is for a lot of people out there.

I write them so that you can imagine what it must be like for the kids who have been diagnosed with JA, who experience all of this when they should be running around on the playground, climbing monkey bars.

I wrote this so that when you meet someone else who you find out has arthritis, you can be able to say “That is so hard, how can I help?” Instead of “isn’t that just aches and pains?”

I wrote this because those of us who suffer from arthritis want you to know, and we want you to care.

I want to know that you care.


12 thoughts on “Pain

  1. Gentle hugs for you Erin. You have managed to put into words what so many feel, thank you.
    Arthritis like many other chronic pain illnesses is an invisible disease. Perhaps if more people spoke out about what it is really like the help would be more forthcoming. It’s people such as yourself who can put into words what life is really like living with a chronic illness who will help change society’s perception of us. I thank you for that.
    Gentle Hugs,

  2. I’m with Anne on the gentle hugs! I do care as well Erin and I know that you are struggling with these achy pains! Hopefully this saying holds true “It can only get better from here on out.” I truly hope it does get better!

  3. Well I do agree with why people don’t get it. Most people think “well you can’t die from it, so whats the big deal.”
    So I’m sure that’s why people don’t understand. I’ve realized that sometimes you just have to spell it out for people.

    Good luck meeting your goal.

  4. I completely understand what it means to try to explain an ache and pain, why you walk funny in the morning, stiff and sore, something obviously deeper to some of us than just “an ache here and there”, to people that “just don’t get it.” I think this post was very appropriate and you managed the subject with candor. I haven’t figured out yet how to “write” about my condition…something very similar to arthritis and actually, WHEN I go to the Dr. it’s usually a rheumatologist. Anyway, thanks for using your voice. And just so you know. I understand. For real. And I care.

  5. Erin: (hug). Your words are so eloquent; they made me cry. I think you are right; so many people have no idea. I don’t have arthritis and I will be the first to admit that I never really thought about the repercussions of it. My heart goes out to you and all of the sufferers. Here’s hoping for a cure and ease for your pain.

  6. I care. For what it’s worth, everytime you mention it, my heart sinks a little each time and I wish I could do something for you.

    Take what little you’ve been given in donations and donate it with faith, my friend; pray over it and trust the Lord will multiply it and use it in all the ways it’s needed because He is able to do so.

    Love ya.

  7. I love you Erin! I wish I could fix it for you! I always feel a little sick to my stomach when I think about what you have to go through everyday and I want to punch anyone who doesn’t feel that way too! 🙂 We’re praying for you!

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