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The Daily Struggle With Chronic Illness and ‘Chronic’ Guilt

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erin kissing her husband in a park
Erin and her husband.

It’s been three years now that I’ve been living with chronic pain and invisible illnesses. It’s taken me the entire three years to come to terms that my life will never be the same, and it’s something I still struggle with every day. What bothers me most, what is usually on my mind, is the guilt I feel.

We are a military family who recently moved from the South to the Pacific Northwest. We’ve lived here 10 months now, and we have not been able to see any local sights, visit Seattle for the day, or do any of the things I see my friends here doing, because of me. I’d love to spend the day in Seattle, playing tourist, but I know I can’t physically do it. I would use half my “spoons” just getting out of bed, getting dressed, and for the car ride. I see friends going on hikes in the beautiful scenery here, and I feel guilty I can’t say one Saturday morning to my husband and son, “Let’s go for a hike!”

Erin with her son at a baseball game
Erin with her son.

What makes me feel most guilty is what I feel I am missing out on with my family. My son plays high school baseball, and there are some away games I have to miss because I can’t drive or even ride in the car that long without knowing I will be in a lot of pain and also paying for it the next day. I feel guilty that my husband, who works 12+ hours most days, has to come home and cook supper, and do the dishes, and in general, clean the house. When he asks me if I want to go out to eat on a Friday night, I want to say yes so very badly, but by that time of the day, I’m lucky to have one spoon left to use, if I can even get off the couch. I can see the disappointment in his eyes, but being the man he is, doesn’t express it to me so as to not make me feel bad about not being able to go out.

I feel guilty when I have to cancel plans with friends. I’ve learned to try to not make plans, but as a volunteer, there are certain things I have to attend, and I enjoy it. There are meetings and functions I sometimes have to miss because of pain or exhaustion. I want to be there for all of my fellow military wives and their husbands at promotions, ceremonies, etc., but sometimes it’s just not possible.

Will I ever be able to rid myself of this guilt? I don’t know. I want to be a super mom and wife, a good friend, a volunteer my fellow military wives can count on, and to be proud of what I’m able to do, instead of what I’m not able to do. Before my chronic pain, one day I decided that having a positive outlook on life was much easier than being negative all the time, and it really did change my way of thinking. It made me happier in all facets of life.

Maybe now is my time to let go of the guilt.

No, not maybe.

It is the time to let it go.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? Check out our Submit a Story page for more about our submission guidelines.

Originally published: May 26, 2016
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