What it's like

Once in a while, I'm asked to explain what it's like to live with arthritis; a chronic disease that causes pain, inflammation and swelling.  I'm sometimes even asked what it feels like.  And while those are questions without simple answers, I'm going to attempt with the simplest answer I can.

What does it feel like?  There are two parts to that question - physically and emotionally.  I'll start with the physical, since that's a bit easier.

You know when you've had a bug, flu or otherwise, that knocks you on your butt?  And you know when you are recovering and on the upswing; when you are feeling better and are so excited that you can actually DO something other than lie on the couch all day?  So you do.  You get up and are excited to try to do stuff.  But you get about 1/3 of the way through your to-do list, and then have to collapse on the couch because you're so exhausted and your body just aches too bad to keep going.

That's me many days.

The difference is I never know which day is going to be one in which I'm capable and have energy and one that I'm going to be exhausted and incapable of doing most anything.  Because that's the thing about a chronic condition, it doesn't ask permission or give me a choice.  Instead, it just takes over when it feels like it; regardless as to those three more things your husband just has to find in the grocery store, whether your son is literally begging you to throw him across the pool one more time, or if it's time to get dressed and ready for work in the morning.  Because no matter how inconvenient it is, sometimes you have to physically sit down right then and there because the pain is too much to stand any longer.  And conversely, sitting in one position too long can be really difficult, seizing up every bit of your body to the point where you feel like you need an extra set of hands to straighten you out.  Hard church pews, long meetings at work, or car rides aren't just painful, at times they can be beyond excruciating.

And what does that pain feel like?  Well, that varies day to day.  But the closest I can explain is it's a cross between having worked out too much in the previous days, those times when your muscles are totally stiff and seized up with being the most swollen and bloated that you've ever felt.  Then throw some broken glass in-between your joints with some shooting, radiating aches from those joints for good measure.  If you've ever had a broken bone, and felt its deep ache when it was healing, it's that type of pain that radiates throughout.  Some days the pain is so intense, every bit of my skin hurts, so I can't even stand being touched.

Which leads to the emotional side of things.

Hugging is a normal greeting. And family members deserve it. But some days, being hugged actually hurts. And that's such a horrible feeling, to not like being hugged sometimes.  To have to ask my clingy, lovey kid to get off me, because he's hurting me is a horrible, shameful thing.

I love writing down to-do lists.  I like accomplishing things.  I don't like being inactive. And so when I am, it feels worthless.  These days, I'm inactive way too much and my to-do lists grow longer, with few things getting checked off.  And, of course, the more I sit, the less active and capable my body becomes.  Which, of course, leads to horrible body image and disappointment in myself.

And even the fear of the disease can sometimes be overwhelming.  Not of the disease itself, but of its effects.  How much am I going to be able to do?  Have I just committed myself to doing something I won't be able to follow-through on when the day comes?  Am I going to disappoint someone yet again when I back out of something because, well, I wake up and find out I just can't do it?  And worse, is when I follow-through on something I know my body isn't up for, because I know the following day I'm probably not going to be able to move off the couch.

So while the pain itself is exhausting, so is the emotional toll.  And that means my need to sleep on difficult days definitely increases.  I'm not sure if it's because I need more sleep, or it's because I wake up so often during those times because I'm in such pain that I need to do it for a longer duration.  Regardless, it takes more time out of my day away from my family to have to do.

Am I depressed? Well, sure.  Wouldn't you be?  But the pain causes the depression, not the other way around.  Not that the medicine doesn't add to that too, because unfortunately it does.  But that doesn't mean that I'm not happy at times.  A lot of times even.  Chronic conditions never go away, so I can't live my life in misery.  Just don't confuse me laughing with me not being in pain.  Because one has absolutely nothing to do with the other.  I do not have a choice as to what I feel.  I can only cope with it the best I can.


Many who have osteoarthritis try to can relate.  And it's hard to tell them that it's not even close, so I don't try.  Because pain hurts, and I won't minimize that, especially when they are just trying to understand and relate what they feel to what I feel.  But it's not the same.  The difference is if you have osteoarthritis, movement is really important for joint lubrication.  When you have an autoimmune arthritis, like rheumatoid or my version, psoriatic, moving more makes you hurt more.  And that already present exhaustion, just gets worse.  This doesn't mean I shouldn't move.  Quite the contrary.  The problem is moving doesn't help make me feel better, it helps keep weight off which does actually help.  Keeping a smile on my face when people tell me to "just do something", though, is not very helpful, and just ends up making me feel lazy.

But this post isn't about pity or sympathy,or even an instruction manual on how to treat someone with a chronic condition. I've just never put what it feels like all down in one place.  And I'm stopping here, because I'm sure I could go on for pages and pages, describing the anecdotes of my days and what it feels like both mentally and physically for me and my family.  But I promised a mostly simple answer to the questions and want to make good on that.

The good news is I have learned a bit from all this. I tend to judge people and their situations much less now.  Because while I don't park in a handicapped spot, those dirty looks I sometimes get for taking the elevator to the 2nd floor still suck.  And so I refuse to judge others' circumstances.  It's a lesson I wish I didn't have to learn this way, but am glad I've learned it anyhow because I can try to pass it on to others.