3 Tips for Coping With the Disappointments of Chronic Illness

The hardest thing for me to deal with in having a chronic illness is the disappointment. I find myself constantly disappointed in my body. On days like today (Easter Sunday), I should be able to go to church, go out with family or friends and be a “normal” 26-year-old. And yet, I’m so tired, and I’m so much pain I can barely move. I always get this twinge of disappointment when I realize I’m not “normal,” I’m limited. I was once a healthy, active young woman. Now, I get disappointed every time it’s a beautiful day and I physically can’t go on the run my mind is telling me to do.

I’m constantly faced with the disappointed faces of friends whose birthdays I missed, or my boss when I miss another day of work, or my family when I miss yet another event. It’s hard to see how they don’t understand, thinking that I’m “just tired” or “making excuses.” It’s hard to watch my roommate struggle to understand my condition — I’m either asleep for 18 hours (without the feeling of refresh that most people get), or in so much pain I can’t walk my own dog or make my own food.

Here are three tips for dealing with the disappointment of having a chronic illness:

1. Forgive yourself.

As soon as you do this, that feeling may subside or go away. I’ve worked really hard to stop blaming myself for having a chronic illness. It’s not something in my control. I practice self-kindness every day. When my body is in pain, I sit in the bathtub with hot water to soothe my muscles and repeat things I love about myself. It relaxes me both physically and mentally.

2. Understand your limitations.

The more I work to understand my limits, the more I’m able to learn how to push and pull with events. For example, during the week, I know my limit is a full day of work. By understanding this, I know that I can’t make any plans after work because I’m not able to keep them, so I stick to trying to plan time with friends or family on the weekend.

3. Be your own advocate.

No one is going to do this part for you. When you advocate for yourself with something like, “I’m so sorry I’m unable to make it, I’m not feeling well today, but I’m doing the best I possibly can,” people will better be able to empathize. Let others know what’s going on. They may not fully understand, but having empathy makes up for it. This may lead to fewer instances of that disappointed look. The more you say you’re doing everything you can handle, the better it will feel for you and others.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.