The Hardest Part of Chronic Illness Isn't Always the Pain. Sometimes It's the Guilt.

The other day, I had some things I wanted to get done. I wanted to work at my computer for a little while, empty a few boxes, and make dinner.

Nothing big. Nothing that would have taken all day.

I couldn't do any of it.

My body said no. It wasn't cooperating at all. I was struggling to walk across the house, much less get anything accomplished.

Almost immediately, I was upset with myself.

"I should be able to get this done!"

I used to do all this and so much more. I would work all day, come home, cook dinner, do laundry, clean the house, and still have energy left for other things. Now I'm looking at those boxes and wondering why something so simple feels impossible.

Why can't I do what I used to? Why is it so hard just to walk across the house? When will my body ever feel normal again?

Then there's the thought that I hate admitting, even though I know I'm not the only one who has it.

"I just want to be normal."

You would think after living with chronic illness for years, I would have figured this out by now. That I can't plan my days like I used to.

Well, apparently not.

I still wake up thinking about everything I want to do, making my little mental list of things that need to get done. Sometimes I don't even consider whether my body is going to cooperate until it becomes painfully obvious that it isn't.

I ended up on the couch playing a video game. I needed something to take my mind off everything that I wasn't getting done.

I also apologized to my husband.

I told him I was sorry I couldn't do anything that day. And of course, he reminded me that he wasn't upset with me. He wasn't thinking anything bad about me, and he certainly wasn't asking me to get up and do anything.

Victor wasn't expecting that from me, I was.

I was doing a great job of making myself feel terrible about it.

Here's something I don't always like admitting. Sometimes I feel like a bad wife.

Victor works a full-time job, and he does so much around our house. I see him taking care of things that I used to do, and I feel guilty. I want to be able to do those things. I want to make dinner, keep up with the laundry, clean the house, and take some of that responsibility off him.

Instead, there are days when I'm sitting on the couch while he's doing all of it.

And I know how that can look.

If someone walked into our house and saw me sitting there playing a video game while Victor was working or cleaning, they might think I was being lazy.

The truth is, I'd much rather be doing those things myself. I don't enjoy watching things pile up or knowing that Victor has more on his plate because I can't do my part the way I used to.

I don't lack the desire to do things. I lack the capacity.

And I think that's one of the hardest things for me to accept.

Because in my mind, I'm still the woman who could do all those things. I still make plans like she does. I still expect myself to accomplish what she could accomplish.

And when I can't, I get frustrated with myself all over again.

Eventually, that afternoon, I had to remind myself of something.

I didn't choose this life. My body chose it for me.

I didn't wake up one morning and decide I didn't want to work as hard or take care of my home anymore. I didn't decide that walking across the house should be difficult or that I wanted to spend days on the couch.

This is the reality of the body I live in.

I can be angry about it, and believe me, sometimes I am. I can spend the day telling myself all the things I should be able to do. None of that changes what my body is capable of that day.

So I'm learning that I have to work with my body instead of constantly fighting against it.

And I say learning because I haven't figured this out yet.

I still want my old capacity back.

I miss being able to do things without having to think about them. I miss getting up in the morning and knowing I could get through my list. I miss being able to clean my house without wondering how much it's going to cost me physically.

Seriously, who would have thought I'd miss cleaning?

Yet here I am.

I think that's something people don't always understand about grief and chronic illness. We aren't only grieving big things like careers, relationships, or plans for the future. Sometimes we're grieving the ability to do laundry, cook dinner, or walk from one end of the house to the other without struggling.

And it doesn't necessarily get easier because we've been sick for a long time.

I know my limitations. I've lived with them for years. That doesn't mean I've stopped wishing they were different.

Here's where things get a little complicated, though.

I really love my life.

I love the life Victor and I have together. I love being home. I love the work I get to do with The Invisible Illness Club podcast and the women I've met through it.

If my life hadn't changed the way it did, I wouldn't have this podcast. I wouldn't have met some of the amazing women I've gotten to know. And I don't think I would be the person I am today.

I've learned things about myself and about other people that I don't think I would have understood otherwise.

One of the biggest is that we really have no idea what someone else is going through simply by looking at them.

I think about how easy it is to see someone sitting down, not working, canceling plans, or needing help and assuming certain things about them.

I know what it feels like to be the person who looks perfectly capable of doing something and can't.

And I've learned that we need to be a whole lot more careful about judging people when we don't know their circumstances.

I'm grateful for that perspective. I'm grateful for the relationships I've made and the life I'm building.

And I still wish I could do my own laundry without having to think twice about it.

I don't think those things cancel each other out.

I can love my life and still miss parts of the life I had before. I can be grateful for who I've become and still wish my body worked differently.

I can even recognize that some wonderful things have come out of living with chronic illness without being thankful that I'm sick.

I think I'm finally starting to understand that accepting my life doesn't mean I have to stop grieving what I've lost.

It means noticing where I am right now and figuring out how to live right here.

Some days I'm at recognizing that than others.

So if you're struggling to accept what your life looks like now, I want you to know I'm still struggling with that, too.

You're not lazy because you can't do what you used to do. You're not failing as a wife, a mom, a friend, or anything else because your body doesn't have the capacity.

And you don't have to feel guilty for loving the life you have while still wishing some things had turned out differently.

I wish I could tell you that I've learned to give myself the same grace I'd give someone else. I'm working on it.

I'll probably wake up tomorrow with another long list of things I want to get done. I'll probably still expect more of myself than my body can manage, because apparently that's a habit I'm having a hard time breaking.

And when I end up back on the couch?

I'm hoping I'll remember a little sooner that I didn't fail at anything.

I had a hard day. There's a difference.