Learning Who I Am Again

Last updated: July 2022

In another blog I wrote recently, I talked about my two year anniversary since I began taking Trikafta. All in all, it was another regular day of taking care of my family and my home. There were cats to feed, laundry to fold, and dishes to wash, but my husband and I made it special by having a nice dinner. Sitting at the restaurant, laughing, eating, and drinking, I was aware of how far I had come in the past two years. And I was also keenly aware of how much I still need to learn.

The physical changes that came with taking Trikafta were obvious and fast. I was healthy. No longer was I coughing all day. And I gained much needed weight to keep my body strong. It was obvious that my physical health had changed. What a lot of people didn’t see was what was changing on the inside. My mental health was changing rapidly, but I didn’t know how to cope with all the changes.

Changes

Being human comes with a lot of life changes. Life changes bring up a lot of emotions. And being healthy after years of slowly dying made me feel like I was experiencing all of them all at once. In previous blogs, I have mentioned survivor’s guilt as well as depression and anxiety. Not everyone had, or has, these feelings, but I did. And I felt them deeply.

When I felt these emotions I was frozen by fear. I was overwhelmed with excitement of a healthier life. And I was overwhelmed with fear of a healthier life. How do I live after just trying to survive? How do I learn to trust my body? I felt like I needed to figure out who I was again.

Figuring it out

Part of knowing who you are is your identity. Most people have things that they use to form their identity. For example, some people find their identity in their job or their religion. Others find their identity in their hobbies or their role within a family.

For many years, part of my identity was that of the sick girl. When I became healthier, I felt like I didn't know who I was anymore. Those feelings confused me a lot. And it gave me anxiety because my reality had changed so much. I didn’t know what to expect anymore.

Changing my expectations to fit my current situation felt like a crash course in figuring out who I was now. I was talking to a friend who put it perfectly. After a long battle with a chronic illness, she became healthier and had to figure a lot of things out. She said that she felt like a toddler learning how to walk. As she was learning she would fumble, get back up, and try again. And one of the things that encouraged me about that is that toddlers usually figure it out after many attempts at trial and error.

Trial and error

There was one thing that helped me the most during this time. I had to accept that I wasn't going to get things right the first time. Or the second or third time. I was learning what I could do with my healthier body. And I had to learn through trial and error what works for me now.

For example, exercising was so hard to figure out. When I was younger and much healthier, I was a long distance runner and gymnast. At one point I thought, "Oh! I'll be able to do all of those things again right away!" And I was so wrong. Not only could I not do any of those neat tricks, I had to learn how far I could push, but not overextend myself.

I remember one day after I started taking Trikafta and I decided to go for a walk. During that walk, I chose to walk until I got out of breath. The thing is, I didn’t get out of breath as soon as I thought I would. When I checked my phone I was surprised at how long I had walked!

When I got home I told my husband and he celebrated with me. We were both so excited I was able to walk and neither of us had thought about if my body could handle the stress. The next morning my body was so sore. Turns out, I had done too much too fast! I had learned a new lesson through trial and error. For my next walk, I set a timer and came home. It took some getting used to, but setting boundaries around how far I could push myself was very helpful.

Setting new expectations and learning my limitations was hard. I had to learn what I was comfortable and confident with. And I had to learn what made me uncomfortable. In addition, I had to learn how to communicate those needs with family and friends, which was another learning curve.

One thing that has helped me is knowing that I’m not going to get it right the first time. I have to figure out what I can and cannot do. I’m a person and most people are trying to figure it out, too. And that means it can get confusing and messy. Learning that it is okay to be a little confused and messy is part of learning who I am again.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Cystic-Fibrosis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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