Lemonade from Lemons: Living With a Hidden Disability
By Lisa Becker, Founder, Secrets of Lemons
Positivity Enthusiast, Speaker, Health Advocate
I’ve always had health challenges. I vividly remember being called to the nurse’s office in high school because friends noticed that I would be in the bathroom for long periods of time after eating lunch. The nurse assumed I had an eating disorder. At 14, I didn’t have the courage to fully explain the debilitating pain that occurred after eating, not to mention to properly share what happened in that bathroom. First the pain, then the hot flashes, which then brought on a panic attack because I knew I had seconds to get to a toilet before a disaster would occur. After “losing my lunch” I would try my best to pull myself together and look normal. I would breathe through the pain, put a smile on my face, and will some level of energy back. Having to return to that lunch table to pretend everything was fine is the perfect example of how taxing an invisible illness can be.
As I got older, and became a wife and a mom, these types of situations became even harder to manage. I will never forget putting my daughter in an empty bathtub during an emergency dash to the bathroom. She was 6 months and crawling, which meant I needed her to be safe and at the same time not get scared by seeing what would happen to me in that bathroom. I distinctly remember singing nursery rhymes to her with a high pitch, so she would know everything was ok. Being a caretaker and living with this horrible disease brought me to my knees in a way I had never thought possible.
Shortly after my daughter turned one, my body decided it had had enough. I landed myself in the hospital which started the path towards surgery. It was a treacherous stay, filled with medical complications, heart-breaking setbacks both medically and personally. After 6 weeks of fighting for my life, I finally went home with an ostomy bag. My entire large intestine needed to be removed in emergency surgery to save my life, leaving me with something called an ileostomy.
Fast forward a bit, to say I was grateful to return home to my one year old and my husband is an understatement. After this life altering surgery, living with an ostomy bag was challenging to say the least. My body no longer looked like everyone else’s. I had to figure out how to take care of myself again, which seems simple but was one of the most humbling moments in my life. “Going to the bathroom” looked different for me now. I dealt with appliance failures that would result in some seriously embarrassing accidents. Intestinal blockages that would sometimes cause violent vomiting resulting in ER visits and pain that would take one’s breath away. Life didn’t get easier, it just got different. Living life with a 13-inch plastic ostomy bag on my stomach was different. How was I going to manage clothing, swimming, intimacy? I was in another “Plan B” of my life. The days of running to the bathroom were somewhat over, but there were new perils of living with an ostomy I needed to figure out. I was grateful to be alive and felt I needed to find a solution to live a better life, despite these challenges.
My desperation, commitment and gratitude resulted in the creation of my ultimate lemonade! I wanted solutions for myself and others living with an ostomy bag. I designed undergarments, athletic gear, bathing suits and other accessories that helped me live a better life after ostomy surgery. My passion grew and I became the founder of Ostomy Secrets, a successful business that manufactured these products that not only helped me, but so many others like me, to live a better life. The experience of creating these products changed my life and it was the ultimate story of making sweet lemonade from the sour lemons of my life.
Living with an invisible chronic illness challenges your mental health in a way I didn’t really understand until I got older. I distinctly remember the huge relief of getting the “official diagnosis” of Crohn’s disease at age 15. It was a relief because it meant my physical struggle was real and not in my head. It is not unusual to feel this relief when receiving a diagnosis because it validates your pain and your own belief knowing something wasn’t right all along. These complicated feelings of relief, mixed with the reality of now managing a medical diagnosis, is what makes living with INVISIBLE medical disability or a chronic illness so difficult. Not being able to “see” a physical condition makes it much more difficult. The mental health toll from living with these health challenges becomes as tough of a struggle as the actual disease itself.
I have lived with Crohn’s disease now for over 30 years and have lived with an ileostomy bag for 17 years. I remember waking up after that first major surgery and feeling overwhelming loss. I also felt (somewhat) pain free, and that was a huge change! After living through dire complications, I was ultimately grateful to be alive. It was this initial feeling of gratitude that I worked hard to make “permanent” in my mental space. There was a reason my life was taking this path and I was determined to make it as positive as I could. For me, giving back and helping others leads to living a life filled with gratitude.
I know this only because I was lucky enough to experience it. Our lemons bring us secret blessings…. if you look close enough. For those struggling like I was, reflect on the people in your life that may have helped you along the way. Friends, family members, coworkers…some people “show up” in extraordinary ways. I feel I’m a better mom, daughter, wife and friend because of the compassion and love I’ve learned from all of my challenges.
When you share your own story, I have learned that you not only help others who may be traveling similar paths, but you also heal yourself. Speaking all over the world gave me pride for persevering. What started as speaking about products that would help solve a problem, became the realization that I was starting the process of accepting my new body. I got to hear so many other stories that gave me even more perspective on how common these internal struggles were. That perspective allowed me to learn about people who had even more challenging situations than mine. The conversations touched me so deeply. By being vulnerable and sharing my own story, I encouraged others to share theirs, and ultimately we realized we are not alone.
From these shared hardships, challenges and collective dialogues, Secrets of Lemons was born! Our goal is to empower both patients and their health care providers. We aim to create a community of people that lift each other up by sharing their stories and perspectives so that we can all realize that we are not alone. We are here to help each other.
The nature of a chronic invisible illness means you don’t SEE it; therefore communication is a key element to managing your medical journey. I want to help both patients and providers to be the best advocates for themselves and become the best caregivers. Part of our mission includes educating each other and our providers. Over the years I have joked that I am a professional patient and have had lots of practice managing relationships with medical professionals. I am so lucky to have had the most wonderful relationships with my doctors, and that didn’t come easy; it took effort on both sides. I want to inspire all of us to do better.
Lisa Becker, Founder Secrets of Lemons
Positivity Enthusiast, Speaker, Health Advocate
I’m a positive-mindset enthusiast, with personal experience managing hidden chronic illnesses–my #lifewithlemons–and a vision to shift the perspective around the challenges that come our way. What does that look like? Empowering patients. Empowering providers. Empowering YOU. If you’re struggling with the burden of chronic illness, managing hidden obstacles in day-to-day life, and anything in between, I’m here to help. Go to SECRETSOFLEMONS.COM to learn more.