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Your Pain is Your Strength, a guest blog by Cameron Ayala

Your Pain is Your Strength, a guest blog by Cameron Ayala

Cameron “Cam” Ayala is a LE&RN Celebrity Ambassador and was featured on the TV shows “The Bachelorette” and “Bachelor in Paradise.” He has primary lymphedema and is known for his bold, confident approach to living with the condition.

If you saw me on “The Bachelorette,” you may have an inaccurate perception of me. They didn’t tell the whole story. Who I am off-camera is different than what you saw, edited for TV.

I was diagnosed with lymphedema at age 11 and suffered in silence for a long time. I struggled to accept the diagnosis because I didn’t want to be defined by it. I never wanted pity or sympathy from friends, family, coaches, or co-workers. I wanted a normal life, fueled by hard work.

And wow, I sure found out that having lymphedema is hard work. I have endured more than 13 surgical procedures and 7 serious infections, not to mention several lost work promotion opportunities and two broken relationships. Although lymphedema has taken so much away from me, I have decided to be a person who fights back - and also a person who gives back.

Lymphedema is a progressive and permanent condition. Once you have it, there’s no cure, although there are some promising interventions. It’s a chronic condition that grows much worse if it’s not managed properly.

On “The Bachelorette,” I wanted to be totally open about my condition. If I was truly going to reach the altar and say my vows, I wanted that person to be able to accept and handle my chronic illness and mean it when she said, “in sickness and in health.”

Keep in mind that many of the contestants on the show with me were in their early twenties with six-pack abs. Most of them had a very different type of energy than I had. Some of them were a bit health-obsessed, and that’s fine, but I have my own view of health. My strength was different from their strength.

My goal was to be vulnerable and transparent about having lymphedema, but when the show aired, they edited out every instance of the word “lymphedema” and robbed me of the ability to share my story. Even worse, they took away an opportunity for 20 million Americans with lymphedema to see someone with their condition represented on TV. 

Standing Up for the Lymphedema Community

After “The Bachelorette” experience, and also another similar experience on the spinoff show called “Bachelor in Paradise,” I felt even more dedicated to spreading awareness about lymphedema and preventing the condition from being edited out of our culture. I began to reach out to the lymphedema community to put my newfound fame to good use.

When the “Bachelor in Paradise” producers approached me about being on the show’s reunion episode, I said yes with one condition: I wanted to wear a t-shirt that says, “I have lymphedema ... Google it!” I wore the shirt, but believe it or not, they blurred out the shirt’s text when the show aired.

Their excuse was that I used the trademarked word “Google,” but it’s in Webster’s dictionary. You don't have to get permission to use it because it’s considered generally-understood vernacular. But once again, they made it seem like lymphedema was a curse word and edited it out of what was shown on TV. 

I was more determined than ever to speak up for the lymphedema community. I received a call from Bill Repicci, the president and CEO of LE&RN. He explained that they’re a nonprofit based out of New York whose sole purpose is to raise awareness and funds for lymphedema education and the global efforts to find a cure.

He invited me to a breast cancer awareness conference where the keynote speaker was Academy Award-winning actress and LE&RN spokesperson Kathy Bates, who I’ve always been a fan of. She’s a southern girl and I’m a southern boy. As Kathy gave the keynote speech at the conference, she told the story of a lymphedema patient who almost lost his right leg.

As I listened to her speak, it dawned on me that she was telling my story. That guy was me! At the end of her speech, she asked me to stand up and the audience gave a round of applause. It was an unforgettable experience. Afterward, we went to a restaurant in Dallas and spent three hours sharing our stories.

I discovered that she and Bill are on the same mission as I am, to spread awareness and educate people about lymphedema. And I also found that they were comfortable pouring their hearts out about living with this condition, just like I am.

Why the Lymphedema Journey Never Ends

The first symptom of my lymphedema occurred when I was playing basketball competitively as a kid and my parents and coaches would notice that I was sort of skipping or limping down the court. My lower back would feel sore, too.

So my parents took me to an orthopedic doctor, who explained that one of my legs was shorter than the other and my x-ray showed black spotting on my right distal femur, right around my knee area. They did some tests and a biopsy to rule out cancer and determined that it was a hemangioma, which is basically dead blood cell accumulation on the bone.

This may have been the triggering event for my lymphedema swelling because, within weeks, my upper thigh started to balloon out to be two to three times the size of my left leg. Although my physical therapists were telling me not to worry, and that some swelling was normal, I couldn’t shake the feeling that my leg felt unusually heavy. 

People with lymphedema understand this sensation, but it’s hard to describe if you’ve never experienced it. It’s like when you’ve rolled your ankle and it swells and feels tight and full. The sensation and swelling progressively got worse, and my parents took me to six or seven different orthopedic surgeons without getting a clear explanation for what was happening. 

Finally, we met the doctor who recognized my lymphedema and explained what was happening in my body. I struggled to cope with my life-changing diagnosis.

I think it’s important to emphasize that people who are newly-diagnosed with lymphedema enter a period that is somewhat delicate and fragile. Suddenly, you’re told that you have a progressive disease that has no cure. You start seeing photos of worst-case lymphedema with elephantiasis, and it feels like your world is crashing down.

I felt like I became a man at age 11 when I was diagnosed. I had to accept it and view it as normal in my mind. If I wanted to play varsity basketball and have other hopes and dreams, I was going to have to work 10, 20, or 30 times harder than everyone else. I knew I could either control it, or it could control me.

That’s why the lymphedema journey never ends. You have the phases of pre-diagnosis and post-diagnosis. Some people have it for 25 or 30 years before they ever even get a diagnosis! 

I think one of the blessings for me, in terms of being diagnosed at such a young age, is that it became part of my daily routine so quickly. If I had been diagnosed when I was in my early twenties, when I was a college student doing classwork, being in a fraternity, and experiencing all the other social distractions, it may have been much more difficult.

Because I was so young at the time of my diagnosis, lymphedema is the only normal that I’ve ever known. Plus, I’m a Virgo with a Type A personality, which makes me very routine-oriented and regimented. Lymphedema just became routine for me.

Words of Wisdom for Newly-Diagnosed People

I’m passionate about 100% owning your lymphedema diagnosis. This is especially important for kids who may be bullied or feel embarrassed about their condition. When people tease you or try to put you down, they’re just projecting their insecurities onto you.

I’d also say that if your physician or lymphedema therapist says something is good for you, it’s good for you. If they say it’s medically necessary, it’s medically necessary. Follow their advice and don’t worry about other people’s opinions.

I went through periods where I was less-than-faithful to my lymphedema treatment routine. I didn’t want to wear my compression stockings in the middle of summertime in Texas. I wasn’t pumping at nighttime. Sometimes I let the teasing get to me. 

I didn't want to be teased for wearing pantyhose, which it looked like at the time, because compression garments back then weren’t as widely accepted as they are nowadays. Now you can watch a professional sporting event - baseball, basketball, football, soccer - and you’ll see athletes wearing compression arm and leg sleeves. They don’t have lymphedema, but it’s the same principle of applying compression to a limb to improve the circulation flow and recovery time.

I paid a price for not following the regimen correctly. The risk of not wearing my garment is having my leg swell up to where my garment won't fit anymore, and I can potentially get cellulitis and other infections. But the reward of wearing it is better mobility and better performance. So I take lymphedema by the reins instead of it taking me by the reins.

Also, pro tip: Make yourself a one-page or two-page timeline of your lymphedema including procedures, diagnoses, and dates. I recently had an episode of swelling and pain that ended up being diagnosed as osteomyelitis, and it was very helpful for my doctors to see my history and understand the bigger picture of what was going on. 

Important Quotes About Pain

Pain is something we live with when we have lymphedema. It’s an ever-present part of the lymphedema experience. So I’d like to share some quotes that may help you keep moving and stay motivated through the pain.

When I had dinner with Kathy Bates that night in Dallas, she told me, “Cam, your pain is your strength.” I think a lot of lymphedema patients can relate to that. When you take the pain from a negative and turn it into a strength, you harness its power.

Another quote comes from former NFL player Ray Lewis. He does a TED talk where he explains, “There are two sides of pain” and that there is always glory waiting on the other side of pain. Whether you’re religious or not, whatever you pray to, or meditate to, or look to, it’s always helpful to envision the glory waiting on the other side of pain.

There’s also something I said - almost a joke, really - that has become one of my trademark phrases. “Just keep lymphin’.” I hope it speaks to the wonderful lymphedema community that has always been so supportive of me. I’m so grateful for that.

When I’ve gone through surgeries, it wasn’t the producers of the TV shows that were calling me and sharing messages of support. It was the lymphedema community. I was receiving supportive calls, emails, text messages, cookies, and flowers from all of you out there, and it meant so much to me.

So remember, you’re not alone. There are millions of us with lymphedema. That's the beauty of it all.