Patient Stories


Lainie Ishbia’s Story: Perfectly Imperfect!

Lainie Ishbia caught our attention with her tagline, Perfectly Imperfect. The Foundation for Peripheral Neuropathy shares a recent chat we had with Lainie on her life, her work, and her inspiration.

Meet Lainie

Lainie is a 47-year-old mom, wife, blogger, social worker, empowerment speaker/educator and self-proclaimed fashionista. Besides hanging with her blended family of 9 (including dogs Lilly & Woody), her hobbies include pilates, entertaining, traveling, and thrift store shopping.

Although Lainie wears two leg braces and struggles with hand neuropathy due to a neuromuscular disease called, Charcot-Marie-Tooth Disorder (CMT), she does not live her life defined by the things she cannot do. Lainie founded, a fashion and lifestyle website for women with invisible disabilities and physical challenges, as a way to help others look and feel their best.

What is your connection with peripheral neuropathy?

Charcot-Marie-Tooth Disease falls under the MDA’s list of conditions, it’s actually a disease that primarily affects the peripheral nerves. I have CMT type 1A (the most common type) which I inherited from my now deceased mom. Unfortunately, my 17-year-old daughter Zoe also has CMT. CMT is a slowly progressive disease; I didn’t experience nerve pain or have to wear leg braces, until I was in my late twenties and I could do things like, button my own shirts and pick up loose change from the ground, well into my thirties. While I try not to focus though on the things I can’t do. I am thankful for organizations like The Peripheral Neuropathy Foundation for helping to educate the world and fund research to find treatments and ultimately a cure.

I love your tagline “Perfectly Imperfect” How did this tagline come about? What does it mean to you?

Thank you! It’s always been one of my favorite expressions. No one real is perfect obviously, but we work so hard at trying to be. Ironically, it is actually our imperfections that make unique and relatable to others.

I know your journey hadn’t been easy. What was the turning point for you? Was there a point at which you said – I can do this or I can do more?

Yes, I put my parents through virtual hell from age 10 until my early 20s. Like many teenage girls, I was insecure and wanted to be accepted so badly. I had a very poor self-image. I felt fat and ugly and hid my body inside of baggy clothing. Having Charcot-Marie-Tooth, which challenged my mobility, gave me an excuse to get out of gym class and ultimately not challenge myself physically. I let my disability limit me and did not take pride in how I looked because I thought it was hopeless. This led to depression and ultimately a cry for help at age 16. I’m not sure if I had an epiphany or just matured and grew up. But at some point, I stopped letting my disability be an excuse for not exercising and taking care of myself. I ate better, lost weight, started weight training, learned how to apply makeup and began dressing in clothing that made me feel good and highlighted the parts of my body I didn’t mind. Even though my physical problems were slowly getting worse, I was more confident than ever.

What would you say to people who are looking for inspiration to live beyond their limitations?

Be creative and don’t give up. Sometimes what seems impossible just needs to be modified. If there is a will, there’s always a way. It may be a different way, but it will get you to a similar place.

What helps you think, I can do this…whatever this is! 

I try to listen to the positive voice in my head that says ”you got this.” I am accepting of my limits as there are a ton of things I can’t do, but I try to focus on what I can instead.

Tell us about Trend-Able 

Trend-ABLE is a place for Perfectly Imperfect women who want to look and feel their best. We offer tips, hacks, and inspiration for ultimately living one’s best life despite physical challenges. There is a strong connection between self-confidence and taking pride in one’s appearance. When people feel positive about what they were wearing and how they look, they also felt better about themselves on the inside where it matters the most. We may not be able to control our disease or condition, but we can control how we choose to live with it.

What do you want readers to take away from your blog? 

I want readers to be nodding their heads as they read the blogs thinking to themselves, “She gets it,” or ”wow, I’m gonna try that!” “I’m going to use that tip/idea.” We have too many social media time-wasters that leave us feeling bad about ourselves. I want Trend-ABLE to empower women with invisible physical disabilities and challenges.

You are such an inspiration – what motto do you live by? 

Thank you very much! That’s so nice. I actually have two: Everyone has stuff! Try to do your best with what you have and move it or lose it.

Share this....

[social-share style="icon" counters="0"]