Hope and Guilt

Guilt. A bad feeling caused by knowing you did or thinking that you have done something wrong, according to Webster.

With this disease, I’ve been struggling with feelings of guilt. Guilt about taking medications, being in pain, being unable to attend events, eating, sleeping, and many other things. Mostly though, I feel my guiltiest when I feel like I’m being lazy, or at the thought of being viewed as lazy.  I often find myself pushing to get through an entire to do list of errands and tasks. And for what? To prove that I have what it takes to run errands and feel accomplished? To show I’m a functioning member of society? To show that I’m capable? These are all noble attributes and nothing worth scolding myself for. So I can knock tasks off my list without a single nap. What am I trying to prove?

I feel like I’m fighting my disease in this manner. I want to do it all. I want to be that friend, that girlfriend, that daughter, that advocate, that yogi, that writer, that inspiration. I don’t want to have this disease impose limits on me or give it control over my life. But, I’m learning, there’s a difference between succumbing to my disease and letting it defeat me: or accepting the disease as part of me and learning to live WITH it.

Yesterday, I was exhausted. And I felt so guilty about sleeping in and laying around for a couple hours watching Netflix and then reading out on the porch. It was Saturday, and I was down on myself for going easy. Granted, I slept less than 5-6 hours a night this week. I was released from the hospital a month ago. I returned to work full time 2 weeks ago. I’ve moved houses, started remicade infusion and now my body has been hijacked by steroid side effects. I’m wringing my eye mask out and stripping out of drenched clothes in the middle of the night from sweating. My face is swollen, my joints ache, and I swing from happy to sad to wanting to throw things every ten minutes. And I’m feeling guilty about wanting to do nothing for a few hours on a Saturday morning.

I don’t want to make excuses. I grew up with a mom who struggled with depression disorders and always needed naps before doing the dishes or couldn’t make it to events or clean or remember commitments because she was too tired. I understand more about her illness now and don’t judge her for needing that time. I know now that this is just part of her, and she does what she can. But I hate when I need it for myself. I have the ambition and I want to feel accomplished. I don’t want to be viewed as lazy or unable.

But I am limited right now.

I’m still healing. And this disease does not have a cure. This disease does not have a cure. When is this going to sink in? Even though I’m nearing remission, I’m still going to be battling this and dealing with symptoms for the rest of my life. This is an autoimmune disease. My body attacks itself. And I’m fueling the fire with guilt about it. So how do I go from battling and fighting to acceptance and building a life around it?

I need a plan.

First of all, time to stop the negative self talk. So, I’m tired. That does not make me a miserable excuse for a human being. It makes me human. A human with a chronic illness. Is it possible to be tired and happy at the same time? What a novel idea.

Step one: If you’re tired, be tired.

But you don’t have to be upset about it. Just be tired, do what you can, and move on .

So you can’t get to all the items on your to do list of the day. Can some things get done tomorrow? Of course. What is really important? Is it even on that list?

Step two: Determine what is important to you

PS.. It should be what makes you feel good. Why have a list of things to do that make you feel worse? You already have a disease trying to do that, remember?

Now time to face the big guns. As much as I don’t want to admit it, there’s a part of me that does care what other people think. Luckily, I have an awesome support system that listens to my ramblings and tends to love me anyway. Other people outside of my circle don’t matter so much. But my inner circle, I don’t want to disappoint them. Sometimes it feels like they’re waiting for me to be “back to normal,” whatever the hell that is. And I don’t know that going back to who I was before is ever going to happen. I might always be a little bit limited. My endurance and strength may never be where they were before, at least physically. Mentally I could blow away the competition in those two categories. I know they’ll love and accept me anyway, but again, I don’t want to disappoint them. They’ve fought right along with me in prayer and hope and positive thinking and I don’t want them to let them down by not healing fully. I know it’s something that will take more understanding and acceptance what this disease really is. And I have to come to terms with this as well. I’m just not the same. And that’s not a bad thing.

Step 3:Talk to inner circle. Believe them when they say you are strong and it’s okay to rest.

They don’t think you’re lazy. They want you to be healthy and happy too. You aren’t letting them down by taking care of yourself. This is the part that you need to do in order to heal and make those prayers answerable.

 

So, these are the things I’m going to work on while embracing (wince) my inflammatory bowel disease. Dear colon, I hug you. Let’s be friends, okay? We’re in this together. Anyone else out there deal with the guilt? How do you manage?

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4 thoughts on “Hope and Guilt

  1. I feel and understand everything you said!!! People can’t see we are sick, so..we don’t want them to think we are..when we are fighting ourselves to accept this is a disease and it can control us, or we can learn to control it. Sleep is a good thing…I heard it once explained, we have a disease where our body fights itself 24/7/365….so, of course, you’re going to be tired, run down, cranky…When I realized that..that I had little to no control over that. I no longer felt guilty about what I didn’t do…but what I DID accomplish!!!! Good luck!!!! I’m here with you

    • Thank you so much for commenting! You’re absolutely right. Good to look on what you did do instead of what you didn’t. I hope you’re feeling well today!

  2. Hey Jacklyn! I love your blog and Instagram! I’m 23, have UC and flared about 2 weeks after you. Hospital, prednisone, and remicade…. I’d love to connect and chat more with you! Email me 🙂

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