Mourning the Loss of the Old Me

I’m often asked, “How did you come to terms with how your rare disease changed your life?” or “How did you mourn the loss of the old you, and how have you been able to get used to the way things are now?” The answer is complicated.

A little back story – I have thyroid eye disease (TED), a rare condition that can cause a number of serious problems. Among them is the swelling of the muscles behind the eyes, which can push the eyes unnaturally far forward. Combine that with eyelid retraction, and it can result in the inability to fully close the eyes, along with drastic changes to one’s appearance.

Looking in the mirror was heartbreaking

“Facial disfigurement” is a painful phrase I’ve seen in articles. Looking in the mirror was heartbreaking. I often thought I looked alarming and, frankly, scary. I could no longer recognize the person in the reflection and began to forget what I looked like before.

TED had a drastic effect on my mental health, and I felt like I lost myself. After an extended period of time, I was finally able to have 4 surgeries to help correct the damage caused by TED. I cannot express how important these surgeries were to me; they gave me so much of my life back, and I am eternally grateful for my wonderful surgeons.

However, with my severe case, I knew that I would never look exactly the same way I did before TED. I am certainly much closer to the old me, but not exactly the same.

I am mentally and physically different now

Mentally and physically, I am different than I was before TED. It’s annoying to manage the persistent dryness (another symptom) – humidifiers, warm compresses, and my monthly bill for eye drops is ridiculous. As a singer, it’s been frustrating to navigate the changes I feel in my nasal passages post-surgery.

Mentally, things are certainly much better, but I still have moments when I look at myself in the mirror (especially when my eyes are a little puffy in the morning) that remind me of the trauma I went through and the “old me” who I lost along the way. I see photos of the old me, and I wonder who she would be now if TED had never upended her life.

Acceptance is an ongoing practice

In short, I’m not “over it.” I don’t think I ever will be because TED will always be a part of my life, along with the fear that a fresh batch of symptoms could resume in the future.

I think that acceptance is an ongoing practice, and things get better with time. I try not to suppress feelings or lean into toxic positivity. Instead, I acknowledge that feelings are there and then try to move on to a task that is not related to TED: “Oh, there’s that old picture I loved. It makes me feel sad to see it now. It’s okay to feel that way. I’ll go for a walk.”

Practicing self-expression and affirmations

I’ve also taken time to invest in self-expression. If I’m different now, I’ll do things differently. I got new glasses and a new hairstyle, and I’ve worked on cool makeup techniques that actually draw more attention to my eyes. I get compliments on my eyeshadow almost daily, and for a change, I feel good about how I look in the mirror.

And I sometimes have a conversation with myself. None of this is fair. No one should have to go through this. It’s okay to not feel strong. Things are so much better now than they were before. It’s not fair, but you’ll be okay.

All I can do is be honest with myself and others

So when people ask me how I’ve mourned the loss of the old me, I don’t really have a solid answer. All I can do is be honest and say that it’s difficult and an ongoing process.

If you’re going through something similar, I see you, I empathize with you, and I hope we all find a little more peace every day.