Guilt

You know, it’s ironic, I was hoping to be able to post on my blog once a week. I think more than a month has passed since my last post, and I feel, you guessed it, guilty about it! Guilt is the negative emotion I struggle with most as it relates to my chronic illness, and I am pretty sure that I am not alone in this. A lot of us “spoonies” (an affectionate term given to the chronically ill) were formally healthy people. We know what it is like to achieve and succeed in school, our chosen careers or as mothers and fathers. We don’t want to be a burden to those around us but are hit by the freight train of our illness, leaving us unable to live the life we once had. It is of course challenging to deal with the daily physical symptoms of being exhausted and in pain, but the fact that my physical ailments effect the people I care most about in the world is a difficult thing to work through. I can’t say that I have the magical formula for dealing with this guilt, but I do want to talk about where it comes from and help anyone reading this know that they are not alone.

As I mentioned, guilt is the most pervasive and insidious negative emotion that I feel. It is a constant battle not to feel like a waste of space when my accomplishments for the day include 1) got out of bed….2) I don’t know man….I’m tired…go away. Now this isn’t every day! But when I compare even my most productive days now to my lazy days 5-10 years ago, it is hard to not get down on myself. It is hard not to feel like my 20 year old self would look at my 28 year old self and be like “wow…that is who I will become? That sucks.” (side note: I was an idiot when I was 20, so my judgments aren’t that damning) I had to get out of the habit of saying “I should be able to do this” because it really got me down. When I felt that I should be able to work a part time job and not feel like a wrung out piece of garbage on my drive home, it messed with my head. Like I wasn’t trying hard enough or pushing myself hard enough.

When I first got sick, I could barely do anything on my own. My husband Brandt needed to cook, shop, clean, take me to the doctor, help me to and from the couch. Pretty much anything that wasn’t taking a shower, feeding myself, or going to the bathroom, I needed help with. I comforted myself through the guilt those days by telling myself that I would eventually get better and there would be a period of our lives where Brandt could fall sick, and it would be my turn to be the nurse and caregiver. I was able to cope with the short-term guilt because I believed that it was temporary. As the years have gone by, and we know that my struggle is a chronic one, the guilt has become much deeper and much more difficult to process. Because I still can’t grocery shop. I can’t do our laundry because the machines are down three flights of stairs. I need help getting up and down stairs. And there is no end in sight to these limitations.

One of the unhealthiest ways that I used to deal with my guilt was to pretend that I wasn’t sick. I would tell Brandt that I felt fine and that I could to go to the store, clean the house, work more, or go to church. I would then deal with the consequences of those actions by ending up even more sick and unable to do anything while passed out on the couch or in bed. It was a cycle that drove Brandt crazy, and it also ate into his trust that I was being honest about my capabilities. He doesn’t know how I am feeling and relied on me being honest to know if I was pushing too hard. He also knows that I don’t like being told what to do. So he was left either 1) letting me run myself into the ground to satisfy my need to feel helpful and productive or 2) irritating me by telling me to lay down and let him take care of things. Neither option was particularly attractive. It took years of this song and dance before I learned that my husband is not impressed by my ability to push through a lot of pain and pretend that I am fine. All he wanted was for me to accept my illness and take care of myself. (Have I mentioned that I hit the lottery when I married Brandt?)

However, how amazing Brandt is also plays into my feelings of guilt! Fun, right?? If you don’t want to listen to me gush, just skip this paragraph. But seriously. I don’t know what I would do without Brandt. He handles my illness like an absolute champ and helped me take my health more seriously and actually means it when he says he wants me to rest. Quick story on his thoughtfulness: when we first got married, Brandt didn’t have regular bowls. He had these weird half-bowls, half plate things. I was a cereal addict, and I liked to drink my milk out of the bowl after I was finished eating my cereal. These bowl-plate dishes would not allow this! So Brandt went and got me (without me saying anything) my own cereal bowl so that I could slurp milk to my heart’s content. But back to the topic at hand! It can be hard to feel so dependent on your partner. I am a very independent creature and want to feel as if I am “pulling my weight” so to say. The fact that Brandt is already a driven, accomplished, selfless man meant that “pulling my weight” next to him was already going to be difficult! Add a chronic illness to the mix where if I am able to make dinner for the night, that’s a win, and you can be left feeling pretty inadequate and guilty about essentially being a breathing couch cushion that needs to be fed and isn’t very comfortable to sit on.

My limitations can also make things difficult with friends.  They are often forced to work around me and what I can handle. I have friends with kids who pack those children into cars to come visit me when it would be much easier for them if I could come to their house. There are also times when I am just too tired or in too much pain to be a good friend. To be as engaged as I want to be or serve my friends as I would like to. I will have phone conversations where I talk about myself and my struggles the entire time before hanging up and realizing how unhelpful and whiny I probably was. Then comes the guilt. One of my good friends in Dallas was moving and expecting a baby at any moment. I wanted with all of my heart to go over and pack up her place while she rested. To help clean or move boxes. Anything to lighten that load! I ended up making freezer meals for her and then Brandt drove them over. It wasn’t nearly as much as I wanted to do, but it was something I could do to show my love. But there are times when even that would be too much. When I cannot do anything to lighten a burden because I am so thoroughly being crushed by my own. I get that this can happen and how terrible it can make you feel. I will say that when you are able, find a way show or tell your friends how much their love means to you. It goes a long way.

I was visiting home recently and had a conversation with my mom about the guilt I carry around. I wanted to make her life easier while I was there. Let me clean the bathrooms while you take a rest. Let me cook dinner while we just chat. Let me run to the store so you can have a hour to yourself. I wanted to have my presence at home valued because I was being helpful. That simply isn’t my reality though. I feel like another burden to take care of. Another worry on my mom’s mind. I have been extremely blessed to have the people in my life that I do. My mom is no exception. She is one of the most insightful people I know. She is also a serviceoholic (is that a thing? But seriously the woman needs the equivalent of AA for people who give too much of themselves). Growing up, I watched this woman lead, serve, volunteer, care, and also be an amazing mom. Once I grew into an adult, I wanted to be the kind of woman she is. My illness will not allow this. And I carried and continue to carry so much guilt over this. My mom is the epitome of goodness. The fact that I can’t literally follow in her footsteps is difficult to deal with. Coming back to our conversation, she of course said exactly what I needed to hear. I don’t need to earn my place in my family by being superwoman. Being myself is enough. And that is the message I want to share to anyone struggling with guilt because you cannot do everything you want to. You are enough. You are fighting a battle against your body. And the fact that you are existing and making the most of what you have is enough.

And that brings me to what I think is the biggest antidote to my guilt: joy. Finding things that bring me joy block out the negative emotions plaguing my mind and spirit. There is a tree outside my window that brings me joy. It’s small. But I have beautiful windows that bring in lots of light to the room where I spend most of my time. This tree has gone through all of the seasons and colors of Boston with me, and seeing it every day makes me happy. Bringing joy to the people around me is a HUGE way to combat guilt. By being positive, by being a listening ear, by sharing empathy with someone else in pain. I am not perfect at any of these things, but they are the ways that I can serve. I can wholly support my husband. Give him more love and devotion than he can handle to show how much I appreciate him. Also, gratitude! Feeling thankful for all of the blessings that I do have drives out the sadness and the guilt brought on by my limitations. Find what you can do in your limited capabilities to not feel sorry for yourself. To push the darkness away and be a light.

I don’t know that I have arrived at anything groundbreaking or life-changing. I just want to validate those feeling guilt over limitations out of your control. You are not alone in your struggle to find a meaningful place in this world that is so dictated by work and the virtue of productivity. And that is not to say that I don’t value work! I do! That’s where the guilt comes from! But you have to learn how to be productive within your own capacity. Resting when you need it is productive. Taking care of yourself so that your husband doesn’t have to leave work to take you to the ER (a story for another time) is a good thing! And most of all, feeling inherent worth because of who you are and how you treat others is more important than attaching worth to what you have accomplished. And I think that is a good thing for everyone to keep in mind.